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Pain Treatment for Terminal Illness
All the passages below are taken from Dr Ira Byock’s book, “Dying Well”, published in 1997.
Q. Mom has cancer, and she's having a lot of pain, despite the Darvon and ibuprofen the doctor is giving her. What else can be done?
A. Plenty. The right treatment will depend on what is causing the pain. Knowing what is likely to work best for an individual person in pain requires knowing about the pain and the person. Having a caring and careful doctor is crucial here. Only occasionally does evaluating pain in a person with cancer require elaborate testing. More often, a simple interview and gentle physical examination suffice.
Doctors are trained to diagnose pains by sorting through common patterns and causes of discomfort. A careful evaluation begins with basic questions: Where do you hurt? Is the pain constant or does it come and go? What makes it better? When is it worse? What type of pain is it: Sharp? Shooting? Pressurelike? Achy? Burning? Or boring? What else happens when you are hurting? Do you get short of breath? Sick to your stomach? It will help to begin keeping track of the type of pains your mother has, their qualities, and any associated symptoms. Make sure that the doctor and nurses who are' managing her prescriptions are asking these sorts of questions.
Although propoxyphene (the generic name for Darvon and, with acetaminophen, Darvocet) is chemically related to morphine, codeine, and other "opioids," narcotics derived from the opium poppy, propoxyphene has relatively little pain-relieving power. Ibuprofen is probably the more potent of the two medications your mother is currently taking; it belongs to a class of drugs called nonsteroidal anti-inflammatory drugs (NSAIDs), which reduce pain by blocking the body's production of chemicals that mediate inflammation. These drugs are particularly effective at diminishing pain from metastatic cancers in bones. Thus, unless the ibuprofen is causing side-effects, such as stomach upset, it may be helpful to use doses in the higher range. However, don't increase the dose of ibuprofen, other NSAIDs, or any medications without speaking with her doctor, because some side-effects are silent yet dangerous.
Most people with cancer pain will eventually require treatment that includes a stronger opioid than propoxyphene. Alternatives include hydromorphone (Dilaudid), hydrocodone (with acetaminophen in Lortab, Bancap, Vicodin, and others), oxycodone (Roxycodone, and with acetaminophen in Tylox, Percodan, Percocet, and Roxycet), fentanyl (Duragesic), and morphine. When they are needed, these medications should be used as part of a pain-relieving plan.
Still other medications may also be used to improve comfort. Steroids, such as prednisone or dexamethasone (Decadron), are often helpful. If bone pain is part of your mother's discomfort, radiation therapy may have an important pain-relieving role to play. Often brief courses of radiation therapy are enough.
When a person's pain persists despite the usual medications and interventions, more extensive diagnostic tests may be necessary to better define the cause of the discomfort and to guide therapies such as nerve blocks or intraspinal medication. [255-256]
Q. I have advanced prostate cancer, and the doctor wants to start me on morphine. I am afraid that if I take it now, when the pain gets worse later, the medication will no longer work. What should I do?
A. The technical term for the effects of a medication wearing off over time is tolerance. While it is true that tolerance to narcotic medication can occur, it is never a significant problem in palliative care practice. During the course of a progressive illness like cancer, it is common for people to require intermittent increases in their dose of narcotic pain medication. Whether the required increase is due to tolerance, progression of the disease, or a combination of the two is usually a moot question. In any case, increasing the dose of the medication usually suffices. There is no maximum dose above which it is impossible to go. The right dose is the dose that works.
Q. My aunt has metastatic breast cancer and can't take narcotics because of a history of allergies to them. How do you treat severe pain when you have such an allergy?
A. People commonly use the word allergy to refer to side-effects that once required them to stop using a certain medication. For instance, a person may report being allergic to codeine and, when asked, describe a bad experience with nausea and vomiting suffered when it was prescribed after surgery years earlier. As awful as the bout of vomiting was, this was a typical initiation side-effect and not a true allergy. (Codeine is famous for causing nausea and is not often used in hospice practice.) True allergic reactions are usually marked by hives, blotchy rashes or, more seriously, the abrupt onset of swelling or shortness of breath following the first dose of a drug. Serious allergies, or anaphylaxis, with opioids or narcotics are quite rare. Even if a true allergy to one opioid medication exists, it is usually only necessary to prescribe a chemically different medication. [256-257]
Q. My uncle has cancer; he has experienced so many side-effects of morphine that he decided it was preferable to live with his pain. Aren't there better medications?
A. Obviously, something must be done to allow your uncle to get relief. What that is will depend on the nature of the side-effects he is having. Somewhere around 25 percent of patients develop excessive sleepiness, confusion, or nausea when they begin taking scheduled doses of morphine or another narcotic. These initiation side-effects usually diminish or disappear within a few days to a week; in this regard, the phenomenon of tolerance is a beneficial feature of narcotic pharmacology. Unless and until the side-effects resolve, they can be treated in various ways.
One narcotic side-effect that consistently resists tolerance is constipation. Almost everyone who is taking narcotic pain medication requires a laxative of one sort or another to have adequate bowel movements. In practice, constipation is only a problem when it is not asked about and prevented or is not promptly attended to.
Everyone is an individual. If side-effects do not sufficiently diminish within a reasonable time, a change in medication is necessary. Reactions to one opioid, such as morphine, do not contraindicate the effective use of another. When side-effects persist, other medications can be added to achieve comfort. Antinausea medications, such as Compazine or Haldol, may be employed. Psychostimulants, such as methylphenidate (Ritalin) or dextroamphetamine (Dexedrine) may be utilized to counteract persistent sleepiness attendant on the needed doses of pain medication.
This may all seem complicated; I include this discussion simply to encourage high expectations and to assist you in identifying the sort of professional expertise to look for. Actually, the level of medical knowledge and technical skill required to treat pain is no more complicated than that demanded of internists, pediatricians, and family physicians in n1anaging diabetes, a serious infection, or a hundred other medical conditions. You should insist on nothing less than expert medical help. [257-258]
Q. My father has prostate cancer and a history of emphysema. He is taking sixty milligrams of long-acting morphine twice a day, which helps with the pain, but he is still uncomfortable. When he asked his urologist what to do, he said he was afraid to let my father take more pain medication because it could suppress his breathing. What would be the right dose in this situation?
A. The right dose is the dose that works. Doctors who are unfamiliar with modern palliative medicine sometimes worry about the respiratory depressant effects of narcotics. The notion that people who are taking narcotics for pain control might stop breathing if they take too much is simply not true. It is a clinical myth extrapolated from the fact that large doses of morphine given to a laboratory animal that is not in pain will depress the animal's breathing. And heroin addicts who are not in pain and who inject industrial quantities of narcotics do, occasionally, stop breathing. The respiratory drive is strong, and in both animals and humans it quickly overwhelms most of the respiratory depressant effect of narcotics. In other words, tolerance to the respiratory effects of narcotics develops rapidly. But even before tolerance sets in, pain is an effective antidote to respiratory depression.
Hospice research over the years has proven that, whatever the underlying neurochemical mechanisms, when morphine or other narcotics are used to treat pain, even in very large doses, there is no appreciable depression of breathing. On the contrary, by reducing anxiety and the physiologic "work of breathing," morphine has been repeatedly shown to improve respiration in patients with advanced lung disease. 
Q. My thirty-two-year-old daughter is having more pain from her breast cancer. Her doctor wants to prescribe long-acting morphine pills, but in the past, whenever the pain was bad, pills never worked. The only time she was ever really comfortable was when she was in the hospital and had injections. Do injections work better than pills?
A. Not necessarily. Pills and injections basically work the same way, by delivering medication to the bloodstream. It's true that the level of morphine will initially rise more quickly with an injection, but the same concentration of morphine in the blood, and the same pain relief, can be achieved by either means. For cancer pain, it is almost always best to use medicine on a scheduled, round-the-clock basis, and oral long-acting morphine is well suited for this purpose. And immediate-release forms of oral morphine in liquid and pills are available for extra "rescue" doses of medication.
Recently, the narcotic fentanyl has become available as a transdermal (across the skin) patch under the brand name of Duragesic. Worn on the skin, Duragesic delivers a relatively constant level of fentanyl to the bloodstream for up to three days; it is useful for some people who have difficulty swallowing tablets or remembering to take their medication.
Injections are used in hospice care when people can no longer swallow pills or liquid medicines. An important trend has been away from intravenous (IV) injections, which require the insertion and maintenance of an IV line, and toward subcutaneous (SC) infusions, which use a fine-gauge needle placed in the loose connective tissue beneath the skin. In our hospice program we generally only use an IV route for pain medications when the person has previously had a surgically placed central IV line for chemotherapy. Subcutaneous infusions are well accepted by patients, easy to maintain, and provide a reliable way of delivering a steady baseline of medication as well as rapid-acting rescue doses.
Beware of intramuscular (IM) shots. They are rarely necessary in palliative care. Intramuscular injections hurt, and the rate of release of the drug from the muscle to the bloodstream is unpredictable. In my experience, the use of IM medications is a clue that the prescribing physician is unfamiliar with up-to-date symptom management techniques.[258-259]
Q. The doctor wants to start Mom on narcotics for her breast cancer. Her sister was once addicted to drugs, and now she's worried about becoming addicted. Is this possible?
A. The myth that people in pain become addicted to narcotics is reinforced by the media's portrayal of addiction and street drug use. The "just say no" approach to illicit substance abuse has fostered a puritanical approach to taking pain medication and as a result many people with a legitimate need for narcotic medication have suffered needlessly in pain. Addiction is defined by the craving for a drug to achieve euphoria, drug seeking in the absence of physical discomfort, and the manipulation of prescribers to obtain drugs. Clinical studies demonstrate that people who receive narcotics for the treatment of pain under the supervision of experienced doctors do not become addicted. Hospice experience bears this out. Following radiation therapy to an area of bone cancer, or in the case of localized pain, after the injection of a long-acting local anesthetic and chemical to destroy the nerve, pain commonly improves, and narcotic medication, such as morphine, can be reduced--and occasionally eliminated--without drug craving problems.
A more troubling phenomenon than addiction is prevalent in certain medical settings. A syndrome arises in which a patient's pain is continually undertreated and, in desperation, the person begins drug-seeking--lying to doctors and nurses and otherwise being manipulative--to obtain some relief. This pattern, called "pseudoaddiction," superficially resembles addictive behavior but has two distinguishing features. First, the person with pseudoaddiction is in pain; second, the drug-seeking behavior does not reflect some problem within the person but rather negligence on the part of the providers of medical care.
Of course, not all concerns regarding addiction can be dismissed as unfounded. Some people do have a history of serious addiction, which can directly or indirectly complicate the management of their terminal illness. Naturally, people who are addicted to drugs also have a right to have their pain treated as they die. When the dying person is known to be actively using heroin or crack cocaine or a similar potent nonprescribed drug, the pharmacological effects must be considered. In addition, there may be legitimate concerns about the diversion of drugs to others or the selling of prescribed drugs for profit.
If the patient has a history of serious addiction but is no longer using illicit drugs or alcohol, the issues are usually very different. In my experience, patients who are recovering drug addicts and alcoholics tend to be among those most resistant to taking pain medication in adequate doses. I try to emphasize to them that this is a medical, not a moral, issue and that taking medication for pain is not addiction. When patients with histories of drug abuse require narcotics after surgery, for instance, they rapidly return to abstinence as their wounds heal. When I am faced with an ardent "Twelve-Stepper" who needs, but is refusing to accept, a certain level of pain medication, I promise that I am prescribing only what is necessary and that, if and when their condition improves, I will reduce the dose.
In our culture, questions regarding drug abuse and addiction will continue to arise. It is important to air any worry about addiction with the doctor who will be in charge of treating your mom's pain. More than likely, it is an issue around which her doctor can be very reassuring. [259-262]
Q. My brother is almost immobilized by pain, but every time the doctor asks about it, he says he's fine. What can I do?
A. Does your brother admit to you that he is in pain? If not, perhaps the place to begin is by gently remarking on his facial grimaces or stiff posture, or short temper, or whatever it is that makes you think he is in pain. Some people think it would be self-indulgent to complain or even admit to being in pain. "There are a lot of people a lot worse off than me," is a common sort of statement. My response to this is usually: "You're right. But so what? Don't you count, too?"
If your brother acknowledges having pain, ask him why he doesn't tell the doctor about it. Does he think that the doctor wouldn't be able to help anyway? Does he expect that he will simply have to put up with pain because of his illness? Is he feeling guilty about being ill ("I brought this cancer on myself by smoking") and, therefore, deserving of the pain? Some people, and some ethnic cultures, believe that pain is part of the healing or cleansing process.
Most commonly, people resist talking to the doctor about pain because of unspoken fears of addiction, or because of their desire to hold off on strong medications "until I really need it." Others deny increasing pain because they fear it means the disease is getting worse. Studies have shown that in medical encounters, such as may occur within busy cancer treatment clinics, patients may not want to take up time, or distract the doctor from "more important" issues, by bringing up their pain.
Encourage your brother to talk these issues out, first with you and other family and friends, second with his doctor. Pain is treatable and is best treated early. If the doctor doesn't seem to have time, ask for an additional appointment. If this doesn't work, ask for consultation with a specialist in pain or palliative care. [261-262]
Q. My dad is having constant pain from his colon cancer. When we asked his oncologist to do something, he said he was already prescribing morphine, and that Dad was doing as well as could be expected. Is there something else we can do?
A. If your dad is in pain, there is always something else that can and should be done. You need to get medical help. The exact approach to your father's pain will be determined by a number of specifics: the details of his illness, the cause (or causes) of his various pains, any additional serious medical conditions, his previous experience with medications, his current dose of medications, and so on. All this is not especially complicated, as medical treatments go, but it clearly requires some expertise. Ask for, or seek out, a consultation with a physician experienced with hospice or palliative care. You might ask a local hospice program to conduct an admission evaluation or ask for a consultation with a hospice nurse. Whether or not your father is eligible for hospice at this time, useful suggestions are likely to come from the evaluation, and it will lay some groundwork for the future. 
Q. My mother has advanced breast cancer and horrible back and leg pains. Her doctor referred her to a pain clinic. How is this different from hospice?
A. Many pain clinics are directed by anesthesiologists and focus exclusively on the physical components of pain. These centers are procedure oriented; as such, they are important resources when nerve-numbing injections or implantable narcotic infusion pumps are called for. But they are not hospices. Only occasionally does a patient's pain require surgically implanted devices or neurolytic injections. In the majority of situations, simpler treatments and medications can be used. Hospice programs consciously look at the bigger picture, attending to pain but also paying attention to the person's medical and nonmedical needs. [268-269]
Q. My child has leukemia. The treatments keep getting more aggressive. I hate seeing him in such distress and would rather lose him than watch him suffer. What can we do?
A. Childhood leukemias are often curable; even in fairly late-stage disease, aggressive therapy sometimes results in long-term survival. Before deciding to stop therapy, be sure that everything possible is being done to ensure your son's comfort. Is he being adequately medicated in advance of painful procedures? Initial pain medication can be given by mouth, avoiding the anticipatory fear of the first needle stick. In many pediatric centers, topical anesthetic cream has become routine before starting IVs or doing any procedures involving needles.
Young patients may need to be held still for various procedures. However, except in true emergencies, it is no longer acceptable to hold a child down rather than medicate him for pain. Do not be intimidated by nurses or doctors who tell you otherwise. Insist that adequate comfort measures are routinely performed. If your child is frequently in pain, or has other physical distress that is not being actively addressed, complain loudly. And keep complaining until things change. 
Q. Our six-year-old boy has a brain tumor and requires pain and antiseizure medication. He hates any kind of shots. What else can we do, if and when he is unable to take oral pills and liquids?
A. Many medications come in concentrated form that requires only that a few drops of liquid be placed under the tongue or in sips of juice. In some circumstances it is preferable to use suppositories or pills that are placed rectally. Research has shown that such pills, properly placed, are absorbed as completely and as quickly as if they were swallowed.
If injections do become unavoidable, ask about subcutaneous infusions, which are the easiest to begin and tend to be very well tolerated. 
Q. Our little four-year-old girl is dying, and it is hard to imagine any possible value in this experience. How can we possibly find anything worthwhile in this awful time?
A. It seems profane to even consider the possibility of anything worthwhile while coming out of your daughter's dying. If this time does have value, it may only be apparent years from now as you look back. Attempting to find meaning in the illness and death of a child can become a trap for parents. There will probably never be satisfactory answers for why this has occurred. The loss of a child may be truly meaningless.
Perhaps the tragedy of a child's death is only outweighed by the miracle of her birth. More than one grieving parent has found meaning in balancing the sense of tragedy by considering the time they had together as a precious gift.
The developmental landmarks that I have already discussed apply in different ways with young children. The key landmarks have to do with achieving self-acceptance, self-worth, a love of self, and the capacity to feel the love of others. These landmarks are more readily accessible to children; the younger they are, the less they have to unlearn. Children are, by nature, innocents. They are not burdened by accumulations of regret, remorse, or guilt, and thus have much less to let go of. Tenderness, vulnerability, and trust, which can be so difficult for adults to achieve, come naturally to them. This ability is an aspect of their inherent wisdom, and is one reason why children tend to teach adults so much even as they die.
Be kind to yourself. Stop looking for meaning and searching for value. This is the most difficult time imaginable. It is enough, for the present, to put one foot in front of the other and remember to breathe. Do it all with a loving attitude; toward your daughter, your other children, your spouse, and yourself. [280-281]
Q. My five-year-old son has had leukemia since he was about one, and it keeps recurring, despite aggressive treatment. How can I begin talking to him about dying?
A. A child's understanding of what dying means will be different from what we might think as adults. The monumental existential issues of loss and finality very often have little power for children. Instead your child may be most concerned about separation from you, in an immediate, physical sense. In whatever you say, therefore, be certain to include reassurance that you will always be there to comfort and care for him.
Children deserve to be treated honestly. It is only fair to tell them when treatments have stopped working. But it is certainly acceptable to balance the bad news with some good. When a decision has been made to halt further chemotherapy, for instance, it is OK to emphasize that he won't have to go to the hospital nearly as often, that there won't be so many needle sticks anymore, and that your family will be spending a lot more time together at home and having some fun.
Your pediatrician, the cancer program, or the local hospice will be able to help and will have some age-appropriate storybooks to help begin talking about dying. A child may understand dying in terms of heaven and the afterlife. Unless such notions are unacceptable within your family's religious tradition, the belief that you will all eventually be back together can be enormously comforting for him. [281-282]
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