Children and Pain
The first and most important thing to remember about cancer pain and children is that pain, whatever the cause, must be treated.
Every effort possible, by parents and by the health care team, must be made to minimize the discomfort children with cancer feel. Allowing a child with cancer to feel unnecessary pain not only steals away the child's quality of life, but also may interfere with healing and recovery. A child whose pain is managed can eat, sleep, socialize and enjoy life a lot more than one who is in pain.
Unfortunately, pain in children is often undertreated, resulting in unnecessary suffering and misery. The reasons for undertreatment can include misunderstanding about whether children feel pain, concerns about pain medications, misconceptions about treatment, and more.
Let's correct some of the most common myths about children and pain:
| The Myth: | Children and infants don't really feel much pain. | |
| The Facts: | If anything, children are more sensitive to some pain than adults are. | |
| The Myth: | If kids are in pain, they'll tell you. | |
| The Facts: | Many children will mask the presence of pain, possibly because they have come to fear injections or other procedures. Some children may be in some level of pain much of the time, and think nothing can be done — so they don't tell. And some kids equate feeling pain with being taken to the hospital — a place they don't want to go. Children may also not complain of pain because they don't want their parents to be upset or unhappy. And finally, some children, especially very young ones, may not have the ability to really communicate what they are feeling about pain. | |
| The Myth: | It really isn't necessary to give kids pain medicine for every little procedure. They get used to it. | |
| The Facts: | For many kids with cancer, pain from procedures, which may seem never-ending, represents as much or more a source of pain on a routine basis than does the cancer. Procedures become nightmares for young children, and without the hope of being comfortable during them, the misery intensifies and the anxiety increases. | |
| The Myth: | Exposing kids to opioid medications will run the risk of drug addiction. | |
| The Facts: | Children are at no more risk of becoming addicted to opioids than adults — and that risk is very low, less than 1 percent. Just like adults, children being treated with opioids develop a tolerance to the medication and will need to slowly taper off the medication if they take it for several weeks or more — but this is not addiction. For more information on misconceptions about opioids and addiction, please see Understanding Pain: The Addiction Fiction. |
Parents have a special role. As primary caretakers of their children, parents are an essential part of every decision and choice made in the care of children — and treatment of pain is a very important part of that care. It will be worth the time it takes to learn a bit about children and cancer pain, so that you can help your child and work effectively with the health care team that is providing care.
Like adults, the causes of pain in children with cancer include
- The cancer itself
- Pain from the treatment of cancer
- Chemotherapy treatment and side effects
- Surgery
- Radiation
- Pain from procedures
For more detailed information about the causes of pain associated with cancer, see Understanding Pain: Causes of Cancer Pain.
Once the health care team has done a thorough assessment and physical exam of your child — learning about his or her condition, developmental level, personality, response to pain, etc. — they will use different methods for further assessment, depending on your child's age. In assessing the pain of young children, your team may use the services of specialists like child life workers or expressive therapists. They are experts in helping young children show their pain on a doll, or talk about pain.
- Infants cannot talk, of course, so the health care team must rely on observation and parental knowledge to assess pain.
- Is the infant crying? Screaming? Groaning?
- What expression does the baby have on her face?
- Is the infant happy or clearly unhappy?
- Is she moving her body freely, or moving very little?
- Is the baby eating?
- Can the baby be comforted, such as by being picked up? Does she stop crying?
- Children ages 2-4 may or may not be able to explain what they are feeling in words, but if a child is usually verbal, having a conversation can be helpful. With children this age, this conversation might work best if a parent is the one talking with the child; there is already a trust there, and a common language. A parent will know what word or words the child uses for pain, such as "owie" or "boo boo."
- Some children in this age range can use a pain scale with faces, such as the one below, to indicate how much pain they are feeling.
- Dolls can help. Ask the child to show where the pain she is feeling on the doll, and then on their own body.
- Patience is the order of the day here. The child should not feel hurried or rushed, but rather relaxed and comfortable.
- A parent's insight will be important to the health care team, in terms of explaining how the child normally behaves when she is in pain.
Wong FACES Pain Scale
From Wong D.L., Hockenberry-Eaton M., Wilson D., Winkelstein M.L., Schwartz P.: Wong's Essentials of Pediatric Nursing, ed. 6, St. Louis, 2001, p. 1301. Copyrighted by Mosby, Inc. Reprinted by permission.
- Some children in this age range can use a pain scale with faces, such as the one below, to indicate how much pain they are feeling.
- Children older than 4 are quite verbal, and can do a good job of telling about their pain. They may need some encouragement and a sense that there is all the time in the world to listen to them. Generally, school-age children can provide information on "how much" pain they are having — using pain scales such as the one above, or even showing with their hands how "big" the pain is. Those just starting school are probably not yet able to communicate that they want or need medicine for their pain, but may instead become quite clingy, asking for a parent to be with them constantly.
- It's important that parents of children in this age group go to some trouble to encourage their child to talk about the pain. These young ones may feel they need a parent's approval to do so.
- Sometimes children get quiet and withdrawn when they are in pain. Take the time to draw out children showing this behavior into a discussion about what they are feeling.
- It's important that parents of children in this age group go to some trouble to encourage their child to talk about the pain. These young ones may feel they need a parent's approval to do so.
- Teens, of course, can be quite responsible and descriptive about their pain. As full partners in their care, teens should be encouraged to be as specific as possible about not only where the pain is, how severe it is, and how long it has lasted, but also to describe the kind of pain they are feeling — i.e., stabbing, shooting, burning, aching, and so forth.
- Medications are often the first approach to pain management in children. Health care professionals will use the same basic guidelines to choose medications for children as they do for adults although the amount of medication used and the timing of medication will be different in most cases.
- Medications that may be used include:
- NSAIDs (non-steroidal anti-inflammatory medications) and acetaminophen (Tylenol) are often used for mild pain.
- Opioids are the medication used for moderate to severe pain, including pain following surgery and some procedures, as well as pain caused by the cancer. Opioids are sometimes given combined with NSAIDs or acetaminophen, or with adjuvant medications (see below). When opioids are used with children, as with adults, constipation is very likely and pre-treatment should be given.
- Adjuvant medications, which are medicines created for another purpose but which also provide pain relief, may include
- Antidepressants
- Anti-convulsants
- Corticosteroids
- NSAIDs (non-steroidal anti-inflammatory medications) and acetaminophen (Tylenol) are often used for mild pain.
- Medications that may be used include:
- Managing Procedural Pain in Children
For many children with cancer, the amount of pain and suffering they experience when being treated for cancer comes largely from procedural pain — needles, lumbar punctures, bone marrow aspirations, biopsies and more. Adding to this is the fact that some children will tense up, and this can cause increased pain for injections and some other procedures.
In too many institutions, injections have been given to children without any effort to ease the pain, on the theory that it would only hurt "for a minute." But when those "minutes" extend over the life of cancer treatment, months and even years, and when those "minutes" become much longer for more complicated procedures, it is little wonder that children become extremely anxious and upset when they must have more and more tests over the course of treatment.
Increasingly, health care providers who regularly treat children with cancer are committed to doing much more than hoping for the best when performing painful procedures on children. The goals are to eliminate or greatly reduce pain, through medication and other tactics as needed, and to do everything possible to make procedures as comfortable and relaxed as possible.
This is what parents should expect, and if anything less is offered, then it may be necessary to intervene and seek more expert care for your child.
- For procedures involving penetrating the skin, there are several very effective medications that greatly reduce pain:
- EMLA (eutectic mixture of local anesthetics) cream is a mixture of two local anesthetics, prilocaine and lidocaine, that is applied to the child's skin where the procedure will take place, and covered with a bandage. This is usually done about an hour or more before the procedure is performed — and in that time, the medication penetrates the skin and numbs it. Once the skin is numb, the EMLA cream is wiped off and the procedure is done without pain. To help convince the child that the skin is numb, tap it after removing the cream, and show her that the medicine has worked.
- Numby Stuff (ethyl chloride) is another, somewhat faster approach to numbing the skin at the site of a procedure. This works by sending local anesthetic into the skin with the use of a low-level electrical current provided by a battery-powered device attached to two pads. One pad has anesthetic on it and is placed on the skin where the procedure will be done; the other pad, acting as a "ground," is placed on another part of the body, or even on another person, such as parent. Electrodes are hooked to the pads and the machine delivers the medication in 15 minutes. Numbness lasts for several hours.
If the child feels a stinging or tingling sensation from the medicine, the parent can ease this by placing the "ground" pad on him- or herself, and placing their hand on the child. If you are the "ground," be sure to remove watches and other jewelry to avoid a shock.
- EMLA (eutectic mixture of local anesthetics) cream is a mixture of two local anesthetics, prilocaine and lidocaine, that is applied to the child's skin where the procedure will take place, and covered with a bandage. This is usually done about an hour or more before the procedure is performed — and in that time, the medication penetrates the skin and numbs it. Once the skin is numb, the EMLA cream is wiped off and the procedure is done without pain. To help convince the child that the skin is numb, tap it after removing the cream, and show her that the medicine has worked.
- For procedures involving penetrating the skin, there are several very effective medications that greatly reduce pain:
- Conscious sedation. For more extensive procedures, such as a lumbar puncture, biopsy, installing a catheter or port, or bone marrow aspiration, the best approach to pain management is often a procedure called conscious sedation.
The health care team will give gradually adjusted doses of medication, usually intravenously or through a central catheter or port, that will make the child relaxed and sleepy. The goal of conscious sedation is to keep the patient relaxed and pain-free just long enough to complete the procedure, and then allow him or her to wake soon after the procedure ends.
For some procedures, it may be necessary to put a child completely to sleep even for a short period. This is called deep sedation.
Special note: sometimes procedures are more painful than anticipated. Encourage your child to let you or the health care team know right away if she or he is feeling pain during a procedure.
Most surgical pain occurs after the surgery ends. The treatment for pain of this kind will depend on the nature and extent of the surgery.
- For minor surgical procedures, pain medications like NSAIDs and acetaminophen may be used. Let your health care provider know if your child is not sufficiently comfortable from these medications.
- Major surgery will require stronger medications that should be administered on a round-the-clock basis until pain is largely gone. In some instances, it might be best to provide pain medications by placing a small catheter in the child's arm or in a space near the spine, which is then attached to a PCA (patient-controlled anesthesia). This allows the child to push a button on the PCA for more medication when she feels pain. Your child cannot overdose on this, because PCAs have lock-out systems to prevent using too much medicine.
It is very disturbing for parents to witness their children in pain. There are, inevitably, feelings of frustration and concern, and anger at not being able to make the pain go away. However, parents can do many things to help a child cope. Here are several recommendations by parents and health care professionals:
- Stay with your child in times of pain. This is very important, even for older children. Having a loved one close by is very comforting and reassuring to children. Being left alone and in pain is frightening.
- Touch your child. Being gently touched offers love and emotional support that helps. If you can hold your child in your arms without causing pain, this is even better than a touch.
- Tell your child the truth about pain. If there is likely to be a little pain, or even more pain, tell this to your child. This will build her trust in you.
- Distract your child with pleasure. Music, favorite videos, reading aloud or just conversation can all help your child relax and enjoy life a bit more.
- Make time for play. Make sure every visit to the doctor's office or hospital for a procedure also includes some time for fun — perhaps a visit to a favorite toy store, the zoo, or to see a friend.
- Explain that the pain will soon go away (if this is true), and if possible, say when this is likely to happen.
- Ask for help from experts like child life workers, pediatric psychologists or expressive therapists if communication is a problem.
- What is your belief about the importance of treating children's pain? What methods have you used to help children who are in pain?
- What kinds of pain is it likely my child will experience during the course of treatment? How will these be treated?
- What medications will be used for my child's pain?
- How will you handle discomfort during procedures, such as injections and biopsies?
- What side effects is my child likely to experience from pain medications? How will these be treated?
- How will we be able to tell if my very young child is in pain?
- My child has come to dread coming to the hospital because each time we come she has to undergo a painful procedure. How can we make these visits less stressful?
