CHAPTER 1. PAIN IN THE TERMINALLY ILL

1.01 Pain in Cancer and Other Terminal Illnesses; Introduction

1.02 The Nature of Pain

1.03 Common Sites and Types of Non-Local Cancer Pain

A. Pain of Neurological Origin

B. Bone Pain

C. Abdominal Pain

D. Lesions of the Mouth

1.04 Pain as a Consequence of Surgery and Diagnostic Procedures

1.05 Pain in Patients With AIDS

1.06 Pain in Other Conditions

1.07 Pain in Special Populations

A. The Elderly

B. Children

C. Minorities

1.08 Early Discussion of Pain Management with Family

1.09 Basic Information About Pain Therapy

1.10 Measuring Pain

1.11 Evaluating Pain; Form

1.12 The Pain Treatment Plan; Form

1.13 Overall Success of Pain Therapy

1.14 AHCPR (DHHS) Guidelines

1.15 AHCPR (DHHS) Statement on Patient Education

1.01 Pain in Cancer and Other Terminal Illnesses; Introduction

Cancer is diagnosed in over 1 million Americans each year, causing death in slightly more than half that number over the same period of time. This corresponds to twenty-three percent of all deaths nationally -- close to 1,400 deaths per day. At the same time, it also leaves close to 8 million Americans living at any one time to deal with either a previous history of cancer or with known residual disease. Worldwide, cancer incidence is somewhat lower, but it still constitutes approximately 10 percent of all deaths.

At the time of diagnosis, approximately one in three cancer patients experience moderate to severe pain, with close to ninety percent of those who are not ultimately cured or their cancer experiencing at least some pain during the course of their terminal illness. Fortunately, appropriate use of pain medication alone will now satisfactorily control pain in nine-tenths of these patients even in the final stages, with other more sophisticated methods being capable of achieving relief in an additional eight percent. This leaves only 2% of terminally ill patients who require more advanced clinical techniques as discussed later on in this book for pain control. As a result, the medical profession can be highly reassuring to cancer patients that they will not be forced to suffer from unrelieved pain unless they, their families, and/or society interfere in some way as to deny optimal care.

This statement may sound strange to the reader, but it is probably the most important message in this whole book -- one that will be stressed repeatedly in this introduction, this chapter and thereafter. There is no longer any need for a cancer patient to die in pain! There are many reasons why this still happens, but the reasons are social, not medical!

Pain in chronic diseases other than cancer is a little more difficult to characterize, but here, too, the modern use of pain therapies developed primarily for cancer patients has generally been found to be equally effective. For example, studies of AIDS patients have shown very similar pain statistics as do cancer patients. Thirty percent have pain as part of their initial symptoms and forty to sixty percent experience pain at any one time later in the course of their disease. Similarly, approximately two to four percent requiring the more advanced pain avoiding therapies available at the end of life -- as discussed at length later in this book.

These statistics should be reassuring to terminally ill patients, but the opposite perception, that many people are doomed to die with unrelieved pain, is hard to overcome for many reasons.

First, because our society relies so heavily for information on unverified media input which is often biased in favor of a specific group of potential beneficiaries, i.e., promoters of alternative medicine.

Second, because we are so ready to accept uncorroborated anecdotal stories told by individuals who are interpreting facts without confirming their completeness or accuracy. For example, I remember well a patient who was widely reported by friends to have died in unrelievable pain when, in fact, he had demanded that narcotics not be given to relieve the pain until the last two days before death.

Third, because many patients want to appear stoical before their physicians and therefore fail to report pain when it exists.

Fourth, and most unfortunately, because many physicians fail to apply the most appropriate means of pain therapy.

But fifth, and perhaps most importantly, because of misunderstandings of legal, ethical, medical and social concerns involved in pain therapy of the terminally ill patients, especially as it relates to tolerance and addiction.

These are the basic reasons why all the "good" statistics I have quoted above cannot overcome the perceived risk of having to die in pain. Because my statistics are based on ideal treatment, and many terminally ill patients do not receive the best pain management. Instead, many continue to suffer unnecessarily due to the multiple outside factors suggested above, only some of which can be blamed on medical providers.

The initial chapters in this book which address pain management are primarily intended to help keep this from happening to the reader or the reader,s loved one by helping to insure proper pain management is provided. To do this, we will repeatedly stress the need for the patient, family, caretakers and providers alike to assume all pain can be controlled to the extent desired. At various times in the clinical course, a rational choice may be made not to seek total pain control -- but this should only occur by personal choice. This means, if you or a loved one is seeking pain relief in vain, you must assume something is wrong with the care being received and must seek additional help in determining where appropriate therapy has gone astray.

If anything comes up which makes you sway from this conviction -- that all pain should be considered relievable -- or if people tell you this is inaccurate, consider the following facts:

First, in the Netherlands where patients can obtain euthanasia on repeat request, although pain is the most common reason why an initial request for euthanasia is made, it is seldom a significant consideration at the time of the second and final request. The reason: once physicians are aware of how bad the pain has become, bad enough to prefer death, it can almost always be relieved.

[Interestingly, in the Netherlands approximately two percent of deaths involve euthanasia -- the same percent of deaths in this country involving the advanced methods of pain avoidance discussed later.]

Second, as discussed later in this book, hospice based physicians who specialize in treatment of terminally ill patients expect them to experience pain and to require a pre-planned approach to pain management, but they do not perceive pain management to be a difficult challenge. In contrast, other physical symptoms like nausea and shortness of breath produce far more difficult problems to overcome.

Third, for what it is worth, the author can honestly report he cannot remember any of his patients dying at home with unrelieved pain. Although some critics might say this is because I didn,t end up caring for those patients with severe pain who end up being hospitalized, I think that is only a minimal truth. Far more important is the fact that being at home signifies an acceptance by all involved that the patient is terminal. Once this happens -- when physicians families and friends accept the inevitability of death and understand that further aggressive care will only prolong death, not life -- there is no longer resistance to effective total pain management.

Fortunately for the author, the writing of these initial chapters on pain has been greatly simplified by the recent interest in pain therapy arising out of the publicity surrounding physician assisted suicide. Especially helpful has been the release by the Agency for Health Care Policy and Research (AHCPR) of a summary of pain management under the title: "Management of Cancer Pain -- Clinical Practice Guidelines." This work, designated as Publication No. 94-0592 [March 1994], is available in its entirety [All 250+ pages] free of charge to clinicians, patients, and family members by calling the National Cancer Institute's toll-free number at 1-800-4CANCER. It is also available by writing to: Cancer Pain Guideline AHCPR Publications Clearinghouse P.O. Box 8547 Silver Spring, MD 20907. A shorter version is also available for physicians [No. 94-0593] and patients [No. 94-0595].

Note that in discussing pain, because the principles involved in non-cancerous conditions are generally similar to those in cancer, this book tends to emphasize therapy developed in treating cancer patients because it has been studied and reported on so extensively. At the same time, it is fair to assume our discussions are equally applicable to other diseases unless specifically noted otherwise in the text which follows.

While subsequent chapters deal more directly with the principles of pain relief and how families can help, this introductory chapter on pain looks in greater depth at pain itself and, more specifically, at the reasons why pain relief is frequently sub-optimal.

1.02 The Nature of Pain

Pain has been narrowly defined by The International Association for the Study of Pain (IASP) as "an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage." For the purposes of this book, however, the author takes a broader view of "pain." When the author speaks of pain herein I will be referring to any combination of an unpleasant nervous sensation from a part or parts of the body, combined with the resulting emotional experience which results. Unlike the narrower concept of the IASP, which seems to require transmission of a pain impulse along nerves containing specialized pain fibers, as used in this book pain only requires the patient's perception of such a sensation. In other words, "pain," as used in this book, reflects both the sensation produced by activity of the patient,s nervous system and the many psychological, personal, and physiologic factors which may so predominate one,s life as to produce the sensation of pain even in the absence of a noxious (pain-producing) stimulus.

Although we tend to think of physical pain as originating in the body and being perceived purely in the brain, recent understanding of pain transmission allows us to consider a third potential site for drug related pain therapy outside both the brain and the area of injury. This understanding has led us to realize that pain transmission is a two directional interaction between the brain and the nerves running in the spinal cord which normally relay pain impulses to the brain from the body. In this two directional system, not only are pain impulses transmitted from the body to the brain, but the brain also sends messages down to nerves in the spinal cord which influence how pain impulses from peripheral tissues are perceived and transmitted. These "descending pathways," as the nerves running from the brain to the spinal cord are called, can be influenced by drug therapy in such a way as to actually decrease the number of pain stimuli carried from the body to the brain. In fact, it has been speculated it is the activation of this system from the brain which explains how acupuncture or even placebos, with no active ingredients, can be helpful in pain therapies.

In considering the origin of pain in the terminally ill, our knowledge stems largely from its occurrence in cancer. Patients with cancer often have multiple types of pain stemming from various complications of the disease. Most commonly, 75-80% of the time, cancer pain is due to tumor progression, the growth of the tumor itself pressing on nerves carrying pain fibers to the brain or by stretching the covering of an organ or tissue which contains similar pain-relaying nerve fibers. In another 15%-20% of cases, pain is the result of cancer therapy, either resulting from operations and other invasive diagnostic or therapeutic procedures or from the toxic side effects of chemotherapy. Less frequently, pain is the result of infections, common in patients receiving cancer chemotherapy, or due to muscle aches associated with limited physical activity. Of course, having cancer does not preclude all the other causes of aches and pains experienced by other people, some of which, like appendicitis, may be difficult to diagnose when the patient is receiving narcotics for cancer-related pain.

1.03 Common Sites and Types of Non-Local Cancer Pain

Most cancer pain is caused by the presence of the local tumor and is determined by the exact location of the tumor, its rate of growth, the proximity to pain nerves, etc. The following describe some common, specific types of pain often associated with cancer.

A. Pain of Neurological Origin

Some of the more difficult pain patterns to treat in cancer patients involve nerve junctions on both sides of the neck or in the area of the pelvis where the nerves to the arms and legs merge before entering or after exiting the spinal cord which lies within the spinal canal. These nerve complexes are referred to as the "brachial plexus" and "lumbar plexus" respectively. Pain from these sources is often felt both in the local area and either from the neck into the back of the head and arm or from the pelvis into the abdomen, buttocks and down the leg. In many cases, the patient also experiences numbness or weakness of the arm or leg as well. Neuropathic pains (pains originating in the nerves) involving these complexus are usually caused by local tumor, but it can be difficult to know for sure because it can also result from previous radiation, the ill effects of chemotherapy, or, less commonly, by stretching of the nerves during a previous operative procedure.

Peripheral nerve injury is also common during surgical procedures for cancer, in which case resultant pain which follows is often made worse by touching specific areas (trigger points) on the surface of the body near the surgical incision. Occasionally, pain is also felt to exist in extremities after they have been amputated (phantom limb pain) due to irritation of the nerves that previously served the amputated extremity. A more specific diagnosis of the pain origin can often be made using radiographic procedures, like CT or MRI scanning.

Another type of nerve pain originates in the peripheral nerves themselves, either secondary to chemicals released by a tumor or, especially in the presence of HIV infection, due to direct involvement of the nerve by a viral infection. Pain from peripheral nerve problems is usually constant, although it may come and go. It is usually described as piercing, like a tooth ache, or as burning. It is also frequently associated with sensory loss producing a tingling sensation, and/or is found in association with weakness of muscle movement in the fingers and toes if it involves the extremities.

This type of nerve pain is particularly important to recognize because it can be difficult to treat with the usual doses of narcotics, thus requiring significantly higher doses than most physicians are used to using when treating other forms of pain. In such situations, when pain originates in the nerves themselves, it may be wise to consider adding special medications developed specifically for the treatment of nerve pain as an alternative to increasing the dose of narcotics.

Nerve pain due to chemotherapy usually occurs in the absence of other nerve findings, and almost always occurs on both sides of the body almost equally. Typically, it is first felt in the most distant parts of the body, the feet followed by the hands. It is most common with specific chemotherapeutic drugs, including vincristine (Oncovin), Cisplatin, and Taxol.

Another common source of nerve pain is shingles, a viral infection closely related to chicken pox, which commonly occurs in patients with all kinds of cancer but especially those with leukemias and lymphomas. Although pain from shingles occasionally occurs without a skin rash, most patients with shingles develop little fluid containing lesions (vesicles) on their skin similar to chicken pox but occurring in limited patches over or close to the same area where pain is felt. Although it may take months to clear completely, and may require large amounts of pain medication for awhile, the pain of shingles usually lessens over a few weeks and gradually goes away completely with time.

Although pain of peripheral nerve injury may be treated with both non-narcotic and narcotic drugs, many other approaches have been developed which act more directly on the nerve itself. These will be discussed in following chapters.

B. Bone Pain

Bone pain is most common in patients with cancer of the breast, prostate, or lung and is almost always due to spread of the original tumor through the blood into the bone. The most common sites of bone spread include the back, pelvis, upper leg, and skull. Because patients often have multiple sites of bone spread, multiple areas of pain are common. Pain is usually described as dull and aching in the area of spread and is frequently made worse by movement. When cancer spreads to the bone, complications such as fractures, compression of nerves as they leave the spine, and high blood calcium levels are common. Spread from the bones of the spine into the spinal canal pressing on the spinal cord is a dread complication of cancer, creating a true medical emergency which requires rapid diagnosis and treatment to avoid paralysis.

Pain resulting from cancer spread to the skull tends to be variable in its effect because so many of the nerves to the face and the sensory organs of the head run through openings in the skull. As a result, the patient may experience both pain and sensory changes in the face, trouble chewing, talking or swallowing, double vision, partial loss of vision, a drooped eye lid, nasal stuffiness, headache, pain when swallowing or upon moving the head in certain directions, etc.

Most spread of cancer to bone will be seen on routine x-rays or found by simple scans using radioactive materials in a procedure referred to as a "bone scan." Bone pain due to metastatic cancer is usually treated with radiation therapy, which tends to be quite successful.

C. Abdominal Pain

The diagnosis of abdominal pain in patients with cancer is likely to be particularly difficult when the patient is receiving narcotics, but once the cause of the pain is determined, it is not particularly difficult to treat. The reason for concern is that many of the complications of cancer which cause pain require surgical treatment, and patients with cancer also develop the kinds of emergency surgical problems which are common in patients who do not have cancer -- like appendicitis, infection of the gall bladder, and perforated ulcers. Among the causes of abdominal pain due to cancer itself are spread of the tumor to the liver or other organs, blockage of the intestines, sudden interference with blood flow to the abdominal organs (the liver, kidney, spleen, or intestines), or direct spread of cancer to the "peritoneum," the inner lining of the abdominal cavity. This latter complication, spread to the peritoneum, is particularly common in women with cancer of the ovaries.

D. Lesions of the Mouth

A particularly distressing cause of pain occurring primarily in patients with cancers around the face is due to irritation of the inner linings of the nose, mouth, throat, and sinuses. Although it may be due to cancer itself, it is more often a result of radiation therapy and/or chemotherapy. Preexisting poor oral hygiene may contribute to the pain, which is often intense and interferes with oral intake of food, liquids, and medications. When caused by chemotherapeutic drugs, the discomfort usually begins 3 to 5 days after therapy is given, reaches its peak at 7 to 10 days, and then slowly improves over the next 5 to 7 days unless complicated by infection or bleeding. When caused by radiation, discomfort is usually first noted at the end of the second week of treatment, plateauing during the fourth week of radiation, and sometimes persisting for 2 to 3 weeks after the completion of treatment. In addition to changes in the lining, pain is often associated with the development of ulcers (deep holes going through the surface linings down into the muscles or other tissue below the mucus membranes).

Treatment of pain around the oral cavity often requires heavy use of narcotics and may require temporary use of artificial nutrition and hydration to get past the period of maximum pain and difficulty swallowing.

1.04 Pain as a Consequence of Surgery and Diagnostic Procedures

Surgical procedures can cause several different types of pain in addition to pain from the incision itself. Depending on the nature of the surgery and the specific tissues or organs removed, patients may experience deep wound pain from the beginning which is usually duller but more distressing, more difficult to treat, and longer lasting than pain from the incision. In addition, many patients experience a variety of conditions referred to as "chronic pain syndromes" after surgery, which may not emerge until weeks or months after the surgery has taken place. Treatment of this type of pain frequently requires pain medication for a period lasting into the months, but usually decreases slowly with time.

In addition to full surgical interventions, cancer patients frequently must undergo painful procedures for diagnosis, therapy, and supportive care, including lumbar punctures, bone marrow aspirations, and biopsies. Although simple injections and vein punctures for blood analysis or the insertion of intravenous catheters are minimally invasive and painful, their frequency and repetition become a major source of distress and apprehension for many patients, especially youngsters who may find them to be the most difficult part of having cancer.

It has been noted that when dealing with youngsters, because of the bonding of parent and child, it is particularly important that both have their questions answered prior to the undertaking of potentially painful procedures. Questions to be answered include:

Why is the procedure being performed?

What is the expected intensity of pain?

What is the expected duration of pain?

What is the expected intensity of anxiety?

What is the expected duration of anxiety?

How often will the procedure be repeated?

How do parents think their child will react?

What reaction do adults predict for themselves?

What is the meaning of the procedure for the patient and the family?

[Note these are also good questions for adults as well.]

Suggestions for dealing with these kinds of problems in children after going over the above questions include the following:

1. Treat anticipated procedure-related pain prophylactically prior to initiating the procedure.

2. If possible, administer drugs by a painless route, such as orally or through an existing intravenous line.

3. When possible, try to cluster procedures at a predictable time and frequency so the patient can expect definite blocks of time when no procedures are to be performed.

4. Be attentive to the environment and to privacy. For children, a room other than the child's room should be used whenever possible. Environmental factors, such as cold or crowded rooms or "beepers" on machines, can escalate distress.

5. After the procedure, review the experiences and perceptions of the effectiveness of pain management strategies with the physician.

6. For procedures that will be repeated, maximize treatment for the pain and anxiety of the first procedure to minimize anxiety before subsequent procedures. It may be reasonable to consider anesthesia or heavy sedation if skilled personnel are available to monitor the procedure.

7. Minimize delays to prevent escalation of pain and anxiety.

8. Ask questions about monitoring and resuscitative equipment if they have not been explained. They frequently are related to insure their will be no trouble from drugs used for sedation.

9. For children, it is usually wise to allow parents to be with the child during the procedure, if the parent chooses to remain. The presence of a controlled parent is a source of great comfort for the child. Parents should be taught what to do, where to be, and what to say to help their child through the procedure. Parents should not be asked to restrain the child during the procedure.

10. Infants can benefit from sensory motor interventions (e.g., using a pacifier, touching, and patting). Potentially effective strategies for older children include distraction techniques such as music, hypnosis, play therapy, TENS therapy and counterirritants such as ice.

11. Remember it is frequently wise to overtreat the likely discomfort with narcotic analgesia and/or local or systemic anesthesia to maintain an appropriate working relationship.

1.05 Pain in Patients With AIDS

AIDS is commonly associated with specific types of cancer, such as Kaposi,s sarcoma and beta-lymphoma of the brain, which can cause pain patterns of their own. But even in the absence of cancer, HIV infection alone is commonly associated with pain requiring the same aggressive style of pain therapy used in cancer. Unfortunately, this is seldom done.

Severe pain due to direct nerve infection with the HIV virus (HIV-related peripheral neuropathy) is a common condition affecting up to 30 percent of people with AIDS. It is typically characterized by a sensation of burning, numbness, or anesthesia in the affected extremity. Several antiviral drugs, such as didanosine (Videx) or zalcitabine (Hivid), chemotherapy agents used to treat Kaposi's sarcoma (vincristine-Oncovin), as well as phenytoin (Dilantin) and isoniazid (INH), all commonly used in AIDS patients, can also cause painful irritation of peripheral nerves producing almost identical symptoms of neuropathy.

Painful rheumatologic manifestations of HIV infection include not only direct involvement of the joint linings (painful articular syndrome) but infection of the joints (septic arthritis), psoriatic arthritis (associated with psoriasis, itself common in AIDS), vasculitis (inflammation of blood vessels), Sjögren's syndrome (joint pains associated with a lack of saliva, tears, etc.), polymyositis (inflammation of multiple muscles), zidovudine myopathy (AZT induced muscle disorder), and dermatomyositis (inflammation of skin and muscle). Reiter's syndrome, a reactive arthritis commonly associated with irritation of the eyes and a urethral discharge in addition to back and large joint pains, is also common early in the course of HIV disease.

Conditions associated with chronic or intermittent pain in AIDS include intestinal infections with Mycobacterium avium-intracellulare (bird tuberculosis) and cryptosporidium (a one celled parasite similar to amoeba), which cause cramping and intermittent abdominal pain. In addition, AIDS is often associated with hepatosplenomegaly (enlargement of the liver and spleen), which results in abdominal swelling and pain, as well as oral and esophageal candidiasis (monilia/yeast infection), causing pain while the patient is eating and swallowing, and inflammation of the brain (encephalopathy) causing painful muscle spasms throughout the body.

HIV-related conditions that cause acute pain in children include sinusitis and meningitis (infection of the covering of the brain), either of which can result in severe headaches; otitis media (middle ear infections); shingles; cellulitis and abscesses (local infections); severe candida (monilia/yeast) skin irritation; and dental caries.

Just as cancer patients with drug abuse disorders are at high risk of undertreatment of pain by physicians who are overly concerned with problems of drug abuse, so are those who suffer from AIDS. Nonnarcotic drugs should not be substituted for narcotics in these patients when severe pain is suspected just because of a known past tendency to abuse drugs or even because of a known present addiction problem.

Because patients with AIDS are usually less well established in life, and because society tends to shun them out of fear, discrimination and ignorance, AIDS patients typically face even greater stresses and depression during the course of their disease than patients with other terminal illnesses. This makes adequate pain control and a promise of adequate therapy in the future even more important in AIDS patients. In a study of pain in ambulatory HIV-infected patients, depression was significantly correlated with the presence of pain. In addition to being significantly more distressed and depressed, those with pain (40 percent) and those reporting inadequate social support were twice as likely to have suicidal ideation as those without pain, of particular importance because of the extremely high suicide rate in these patients.

The issue of drug abuse is also problematic in the pediatric HIV population. Many children with HIV infection live in families where intravenous drug abuse is or was a problem. Either they have parents who are actively using drugs or are recovered from drug abuse, or they live with extended family who have had experiences with their drug-abusing relatives. In these environments, questions arise about the safety of prescribing opioids for the child. Extended-family members are often anxious about the use of opioids for a child whose parent was a drug addict, fearing the child will also become addicted. These fears and concerns should be anticipated and discussed, and explicit plans should be put into place to minimize the risk of drug diversion.

The general management of pain in children with HIV is the same as for children with cancer. The assessment of pain in HIV-infected children may be complicated by the frequency of encephalopathy (brain dysfunction) and related developmental delays. It is often difficult to determine whether an encephalopathic (brain injured) infant or toddler who cannot talk is in pain. Observations of a child's response to a trial of pain medication may be the best means of assessing such a child's pain.

[Note: Many of these factors are further discussed below in the chapters on pain therapy and later in the chapters related to suffering.]

1.06 Pain in Other Conditions

Just as both cancer and AIDS patients commonly complain of sensory neuropathies resulting from nerve damage, similar pains of nerve origin are frequently noted in patients with kidney failure or long-standing diabetes.

Patients with heart failure may suffer from pains related to water retention, especially over the liver area at the bottom of the right side of the rib cage, while other patients with diseases of the blood vessels may develop pains in the abdomen or extremities because of a limitation of the blood supply.

Still other terminal illnesses, like strokes and neuro-muscular disorders, may lead to such joint immobilization that even such low level activity as turning over in bed or moving joints may cause pain, often without evidence of any local disease process.

1.07 Pain in Special Populations

Special attention may be required when treating pain in special populations, including the very young and very old, those who are confused or disoriented, and non-English-speaking persons. In these groups, uncontrolled pain can be particularly distressing because they are unable to rationalize any reason for the experience or to understand that the situation is temporary.

A. The Elderly

Elderly patients are often undertreated for cancer pain. Fortunately, because this has become so well appreciated, the attitude of health care professionals, the public, and patients toward pain is changing as we come to realize neither acute nor chronic pain is part of normal aging.

In some instances, pain is not assessed because the elderly patient is somewhat confused making it difficult to communicate their pain to health professionals or may be ignored by those who believe pain is normal with age. In other instances, clinicians have mistaken beliefs about decreased pain sensitivity and heightened pain tolerance in the elderly or of the ability of the elderly to tolerate narcotics, thus leading them to underprescribe analgesics. Often overlooked is the fact that elderly patients are more likely than younger patients to also have pains from non-cancer chronic illness which still require therapy to avoid the additive effect of multiple pains.

In addition to having misperceptions about treating pain in the elderly, troubles are likely to be encountered with the use of pain measurement scales developed for younger patients, which function poorly in the presence of mental confusion or physical impairments with vision, hearing, or motor skills.

Such misinformation and testing problems are difficult to overcome, in part because of inadequate field research, routinely undertaken by pain clinics serving only the most mobile of the elderly, not those suffering from cancer. Furthermore, elderly patients are often excluded from research oriented rehabilitation or pain management programs, making them infrequent research subjects.

While it may be true that some of this concern with large doses of narcotics in the elderly is justified, it has to be individualized. The elderly are said to be more sensitive to the pain relief of opioids because they develop higher blood concentrations with delayed clearing of the narcotic from the blood, but this varies greatly from patient to patient. Initial doses suggested for "all elderly" may therefore be too low to obtain adequate pain relief in any one individual and may require additional dosing from the start. Again, because the elderly are known to frequently have decreased rates of drug metabolism, they are feared to be particularly vulnerable to drug accumulation, leading physicians to routinely lengthen the time between doses in addition to lowering the dose of narcotics given. If this approach is taken in an individual with a normal metabolic rate, however, periods of pain are likely to recur before the next due dosing. Only careful measurement and evaluation of pain can provide the information necessary to insure the proper dosing to prevent the continued presence of unrelieved pain.

Finally, the elderly are more likely to have other conditions which make them more susceptible to becoming delirious when given narcotics than younger patients, increasing natural reluctance of physicians to use these drugs to the full extent indicated or commonly given to younger patients.

B. Children

Recent use of highly aggressive chemotherapeutic approaches in children with cancer have increased survival rates markedly. Unfortunately, such regimens often involve treatment toxicity that results in painful conditions, most notably from infection, peripheral nerve damage, and severe irritation of the mucus membranes of the mouth and throat. Successful treatment of pain in this population involves a number of unique considerations.

1. Because a child is unlikely to accurately assess pain on request from a physician, treatment of pain in children requires knowledge of the person to whom the child is likely to have communicated about pain and the child,s method of communicating, e.g., "hurt," "owie," "boo-boo."

2. Patient-controlled analgesia in which the child can trigger the release of additional pain medication should be considered even in young children. Most children over the age of 7 understand this concept, and sometimes even younger children can learn to use it successfully.

3. Pain control in children may be benefitted by the use of stimulants such as Ritalin and amphetamines, which are generally given at times of desired wakefulness, such as morning and midday. Unfortunately, their use in the drug culture [as "speed" or "meth"] often makes families reluctant to allow a trial of their use to the detriment of the child.

4. Unlike adults, young children have difficulty communicating symptoms like itching, nausea, constipation, and generally feeling bad. Their presence is often best indicated by increasing restlessness or irritability, which must be considered a sign of an unexpressed discomfort the nature of which needs to be determined.

5. Nonpharmacologic methods may be very helpful in children with pain, although little research has focused on their use. For example, distraction techniques might involve reading or telling a favorite story, talking about the story's characters, or playing video games. Preparation for painful events could involve the use of a puppet, a favorite cartoon character, or an animal. Stuffed animals with inserted audiotapes of stories or music may help to induce a state of relaxation. Something familiar to the child may facilitate participation in these non-pharmacologic strategies.

6. When a child is in pain, the presence of a parent is usually helpful. Other methods of psychological support include holding someone's hand, a stuffed toy, or favorite blanket; asking questions; using distraction; sleeping and resting; relaxing or using imagery; changing positions; and engaging in humor can have powerful effects. Although not well researched in child populations, measures such as physical therapy, TENS [electronic stimulation; described later], splinting a painful extremity, positioning, the application of heat or ice, and massage may help relieve pain.

7. Proper measurement of pain and evaluation of pain interventions as discussed in the next section is of utmost importance in children who are less able to indicate directly their level of pain and distress.

8. Any reservations the parents may have about the use of narcotics for pain relief needs to be thoroughly discussed prior to their initiation except in an emergency.

C. Minorities

Minority patients are likely to receive less adequate cancer treatment than average. Indexing the adequacy of cancer pain management by WHO standards, a recent multicenter study found minority patients, African-Americans and Hispanics, with pain due to metastatic cancer were three times more likely to have inadequate pain treatment than those seen in non-minority settings. The reasons are unclear, but would seem to include less frequent follow-up care, more concern about the potential addiction both on the part of the patient as well as the physician, increased difficulty in obtaining narcotics from drug stores due to concerns about theft and violence, poorer financial payments for pain therapy, and less time spent by providers to ask about and evaluate the presence of pain.

1.08 Early Discussion of Pain Management with Family

Many problems of pain management arise when there is insufficient communication between health care providers and families in formulating a general plan of therapy from the beginning of an illness or at the first time it becomes apparent the patient suffers from a terminal illness. The number of possible considerations at this point are endless, but the basic decisions which must be made are how aggressively the underlying disease should be treated, how aggressively the pain is to be treated, what should be done if aggressive treatment of the illness is likely to produce additional pain, and how to approach a situation in which obtaining greater pain relief will reduce the patient,s awareness of and ability to relate to his or her surroundings.

Also basic is an understanding of the three stages of cancer therapy. In the first or active stage, which generally lasts until it is determined cure is not possible, most families and health care providers agree to do everything possible to obtain a cure, including such technologically advanced approaches as bone marrow transplantations when indicated. During this phase, the usual feeling is that pain should be endured in the hope of obtaining a prolonged meaningful life -- but this should not interfere with adequate pain therapy, unless doing so would interfere with the final results.

In the second stage, when the terminal nature of the disease is known but the patient can still enjoy life, therapies are undertaken or not (often referred to as "forsaken") based on a balancing test which tends to look at the quality of life as well as the risks and burdens of any procedure. During this period, surgery or chemotherapy that will make the patient miserable for ten days may be justified if it will add thirty days of quality life in the end, but is not justified if it will only add ten days.

Then, in the final stage, it is accepted the patient will, in fact, no longer have quality days, and everything done to prolong life will only delay death without benefit to the patient. At this point a consensus should be reachable that nothing will be done which is likely to cause pain, not even a needle stick to obtain a blood test, and all care will be directed solely at comfort. With this acceptance comes an appreciation that if pain relief requires interventions which might inadvertently shorten life, it will be given.

Two aspects of this type of staging is of particular interest to the author. The first is that we as physicians switch from stage one to two, and then two to three, very dramatically in time. A decision which is deemed as appropriate yesterday becomes inappropriate tomorrow, a difficult concept for the average layman.

The second aspect closely related to bioethics and decision-making is that the patient should be the one to decide when care should switch from stage one to two and two to three, but often the patient is not capable of doing so. In this situation, if there are many concerned family members and friends, there is usually a short period during which there is a difference of opinion among the surviving caregivers, with a little time being required to obtain agreement or near agreement. During this time, medical providers will invariably -- and wisely, I believe -- continue with the approach of the more aggressive stage knowing that within a few days, as the unconvinced witness progress of the disease, a consensus will be reached.

During this early discussion period, one of the most important goals is to reassure the patient and family of the intent and ability to make full use of pain therapies which can assure one hundred percent effectiveness if so desired by the patient. At this point, questions related to the use of narcotics and the potential for addiction and habituation are likely to be raised, at which point the patient and family needs to be reassured not only that this should not be a concern when dealing with a terminal illness, but that the physician does not intend to allow this fear to interfere with effective pain relief.

In fact, the family can and should be reassured that the need to closely balance pain relief against over-sedation or mental confusion seldom becomes a problem until the final stage of the illness is reached. By this time, past history has shown that everyone will tend to accept that there is no need to limit narcotic use except for specific purposes, such as temporarily improving mental function required to sign an important document or to visit with a particular individual of importance to the patient.

During this initial discussion, it is also important to point out the significant connection between the perception of pain and other aspects of cancer care. As noted by Drs. Carla Rimaponti and Eduardo Bruera, two leaders in the field:

"Pain is always subjective; it is what the patient says hurts. A patient's threshold of pain is an individual concept. It can be raised by adequate sleep, mood improvement, diversion, empathy, and understanding, while fatigue, anxiety, fear, anger, sadness, depression, and isolation can lower the pain threshold. The perception of the intensity of pain relates to the interactions of physical, psychologic, cultural, and spiritual factors rather than to the type or extension of the tissue damage. Thus, successful pain control requires a multidisciplinary approach to treatment that addresses all aspects of care and suffering."

This means that if other non-pain symptoms, such as physical incapacity, social isolation, fear, or hopelessness are not addressed, pain management will fail to impact on quality of life in a meaningful way and pain relief is likely to go unrecognized by the patient. Conversely, when little can be done to relieve physical pain without overly interfering with the patient,s quality of life in other areas, one can still be helpful by intensely addressing other symptoms just as one would aggressively treat pain if possible. Management of other symptoms may be pharmacologic, but is more likely to be of a social or psychiatric type. Such approaches are discussed elsewhere in this book.

1.09 Basic Information About Pain Therapy

The Department of Health and Human Services guidelines suggest there are certain basic questions and concerns cancer patients and their families have which should be specifically addressed by physicians even if not asked. These include:

1. Should I only take medicine or other pain treatments when I have pain?

Answer: You should not wait until the pain becomes severe to take your medicine. Pain is easier to control when it is mild than when it is severe. You should take your pain medicine regularly and as your doctor or nurse tells you. This may mean taking it on a regular schedule and around-the-clock. You can also use the other treatments, such as relaxation and breathing exercises, hot and cold packs as often as you want to.

2. Will I become "hooked" or "addicted" to pain medicine?

Answer: Studies show that getting "hooked" or "addicted" to pain medicine is very rare. [And is not particularly harmful when dealing with a terminally ill patient.] Remember, it is important to take pain medicine regularly to keep the pain under control.

3. If I take too much medicine, will it stop working?

Answer: The medicine will not stop working. Sometimes your body will get used to the medicine. This is called tolerance. Tolerance is not usually a problem with cancer pain treatment because the amount of medicine can be changed or other medicines can be added. Cancer pain can be relieved, so don't deny yourself pain relief now.

4. If I complain too much, will I be considered to be a poor patient?

Answer: Controlling your pain is an important part of your care. Tell your doctors and nurses if you have pain, if your pain is getting worse, or if you are taking pain medicine and it is not working. They can help you to get relief from your pain.

5. Will I have pain from my cancer?

Answer: Not necessarily, although most patients do at one time or another. But remember there is a great deal we can do to relieve the pain if we work together to get it done.

6. Is it necessary that pain be treated?

Answer: No, it is not required. Just as treating it early will not make it worse later on, failure to treat pain early will not influence the degree of pain days later, although early treatment may prevent worse pain a few hours later.

7. Is it wise to treat pain early?

Answer: This is your choice, but there is little reason to delay treatment and there are potentially bad effects of remaining in pain. These include such things as limiting your activity, interfering with your sleep, keeping you from enjoying family and friends, lessening your appetite, and causing fear and depression, as well as worrying and troubling your family and friends.

8. Will the treatment of my cancer pain influence the other pains I have from the past or in the future?

Answer: Cancer treatment is not likely to interfere with other diseases that might cause pain, but pain medication given for the cancer is also likely to reduce the pain you would have from other diseases. This is usually good, but may be troublesome if it interferes with your ability or the ability of your doctor to recognize other problems, such as appendicitis.

9. What can I do to help my doctors treat my pain?

Answer: The most important thing you can do is to be observant of your pains and to notify your physician when they change, when they get better and when they get worse or if you develop any problems which you think may be coming from the pain medication. It is also wise to tell your doctors if you are taking any medicines not known to him or if you plan to try any other medicines, if you are using any additional remedies for pain, if there are any pain medications that have been particularly helpful for you in the past, or have caused you any troubles in the past, including allergies. If your physician suggests the use of any medication or therapy which causes you fear, it should also be discussed before the treatment is tried.

You may want to fill out the form "Evaluating Pain: Form 1" below to help your physician at the time of his evaluation to develop a plan to treat your pain.

10. Will I have side effects from the medication?

Answer: All medicines can cause side effects, but not all people get them and, in fact, more often than not there are none. When they do occur some people have different side effects than others. Most side effects happen in the first few hours of treatment and gradually go away. Because of the variation from person to person, it is generally wise not to do anything special unless a side effect occurs. The one possible exception to this rule is undertaking preventive measures to avoid constipation when narcotics are given, such as drinking lots of water, juice, and other liquids, as well as eating more fruits and vegetables. Your doctor or nurse may also be able to give you a stool softener or a laxative.

1.10 Measuring Pain

Because pain is subjective (determined purely by the patient,s perception) there is no way for the severity to be determined by another party directly. This makes it essential to obtain information about its severity from the patient whenever possible and from the closest care-giver(s) when it is not. This has led to the development of a number of approaches which are intended to give the physician, who is only present intermittently, a better guide to the patient,s pain levels over a twenty-four hour or longer period.

Advances in pain measurement has pointed out that many patients with cancer experience many different pains at the same time, with the more severe pain often drowning out the lesser. As a result, upon successful treatment of the more severe pain, there is typically an increase in complaints about the less severe. To prevent this type of confusion, it is important that whatever pain scale is used, it needs to be applied individually to each individual pain perceived by the patient.

There are many scales and methods of recording pain in use, but most employ either a numerical rating, a visual scale, or a description of severity. A typical version referred to as a "Numerical Intensity Scale" asks the patient to assign a number to the intensity of each of his/her noted pains on a scale of 0 to 10; 0 reflecting "No Pain" and 10 reflecting the "Worst Pain Possible."

0-10 Numeric Pain Intensity Scale

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Table of Contents Introduction Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7
Chapter 8 Chapter 9 Chapter 10 Chapter 11 Chapter 12 Chapter 13 Chapter 14 Chapter 15 Chapter 16 Chapter 17

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