Diseases & Conditions : Care of the Terminally Ill Child
Physical Needs of the Dying Child
Meeting the physical needs of the dying child are aimed at providing as much comfort as possible. The change from curing to caring means providing comfort to the child with the least invasive procedures, while maintaining his or her privacy and dignity. A terminally ill child has many of the same needs as any seriously ill child, including:
A routine for sleep and rest. Lack of sleep may be caused by the number of visitors, discomfort, fear of not waking up, restlessness, or day and night confusion. Keep a night light on and/or a bell or intercom available so your child will know where he or she is if awakened and confused. A clock is also helpful for older children who can tell time to help them orient themselves. Your child should have the ability to call on someone, if needed.
Nutritional considerations. Nutritional considerations for the dying child may be difficult to address. Nausea, vomiting, diarrhea, and reduced eating are often associated with the effects of treatment and the progression of the disease. High-protein shakes may be an option if the child is only able to eat or drink small amounts. A nasogastric or gastric tube is another option for supplemental nutrition. A gastric tube is placed through the skin into the stomach. A nasogastric tube is a tube placed in through the nose that extends to the stomach for delivery of medications and/or nutrition for digestion. Total parenteral nutrition (the delivery of nutrients, calories, protein, fat and/or all caloric needs through a vein) is given into the blood stream and may be necessary if significant nausea, vomiting, and/or diarrhea are present. An evaluation of the options available to provide nutrition will be discussed with the physician, a dietician and/or a pharmacist.
Changes in elimination. Changes in elimination may also occur with a seriously ill or dying child. Diarrhea, constipation, and incontinence are all possible. Care should be given to provide the child with a clean environment. It's also important not to embarrass or humiliate a child who has recently become incontinent (unable to control the bowel or bladder).
Skin care. Skin care may also be a concern for the dying child. Nutritional status, elimination problems, and immobility can all cause pain and/or skin breakdown. Infection may likely occur in this situation. The decision to use antibiotics can be discussed with your child's physician. Fever, however, may be a source for discomfort. Medications that reduce fever, such as acetaminophen, may be given for comfort.
Respiratory changes. Respiratory changes may occur from pneumonia, the effects of narcotics, or the progression of the disease. Often, the child will feel he or she is unable to "catch his or her breath." Air hunger, as this is often called, can be frightening for the child. Decreased oxygen in the bloodstream may also cause the child to have a seizure. Oxygen supplied through the nose or by a mask may be needed simply for comfort. Sometimes medications can also lower the child's anxiety related to breathing difficulties.
Nasal symptoms. Secretions from the nose, mouth, and throat may be difficult to manage with a terminally ill child. Suction devices are available, or simply, repositioning the child may help drain the excess secretions. There are also medicines that help lessen the amount of secretions.
Pain management. Pain management is an important concern in the dying child. With a child who is dying, one of the greatest fears is pain. Every measure should be taken to eliminate pain from the dying process.
Pain control options and management plans should be discussed before the child experiences significant pain. Fear of addiction to narcotics is common among families. It's important to understand, however, that the ultimate goal is comfort, which means taking appropriate measures to assure the child is free from pain. There's no evidence of addiction to pain medications in dying children.
Pain is a sensation of discomfort, distress, or agony. Because pain is unique to each individual, a person's pain can't truly be judged by anyone else.
Pain may be acute or chronic. Acute pain is severe and lasts a relatively short time. It's usually a signal that body tissue is being injured in some way, and the pain generally disappears when the injury heals. Chronic pain may range from mild to severe, and is present to some degree for long periods of time. Medicating pain before it becomes too severe is advised. If pain medication isn't given for a long period of time, it may not be as helpful.
Many people believe that if a person has been diagnosed with a terminal illness, he or she must be in pain. This isn't necessarily the case, and, when pain is present, it can be reduced or even prevented. Pain management is an important topic to discuss with your child's physician.
Pain may occur as a result of the illness, or for other reasons. Children normally have headaches, general discomfort, pains, and muscle strains as part of being a child. Not every pain a child expresses is a result of the illness.
Treatment for pain
Specific treatment for pain will be determined by your child's physician based on the following:
Your child's age, overall health, and medical history
Type of illness
Extent of disease
Discussion of treatment options
Your child's tolerance for specific medications, procedures, or therapies
Your opinion or preference
Methods for reducing pain are classified as either pharmacological or nonpharmacological.
What is pharmacological pain management?
Pharmacological pain management refers to the use of pharmaceutical drugs or medications to relieve pain. There are many types of drugs and several methods used in administering them. Pain medication is usually given in one of the following ways:
Orally (by swallowing)
Intravenously, IV (through a needle in a vein)
Using a special catheter in the back
Through a patch on the skin
Examples of pharmacological pain relief include:
Analgesics (mild pain relievers)
Sedation (usually given by IV)
Anesthesia (usually given by IV)
Topical anesthetics (cream put on the skin to numb the area)
Narcotics (strong pain relievers)
Some children build up a tolerance to sedatives and pain relievers. Over time, doses may need to be increased or the choice of medications may need to be changed.
What is nonpharmacological pain management?
Nonpharmacological pain management is the management of pain without medication. This method utilizes ways to alter thinking and focus to decrease pain. Methods include:
Psychological. The unexpected is always worse because of what one imagines. If the child is prepared and can anticipate what will happen to him or her, his or her stress level will be much lower. Ways to accomplish this include:
Explain each step of a procedure in detail, using simple pictures or diagrams when available. Child life specialists, experts in child development, can help parents prepare children for medical procedures or treatments.
Meet with the person who will perform the procedure and allow your child to ask questions ahead of time.
Tour the room where the procedure will take place.
Adolescents may observe a videotape, which describes the procedure, while small children can "play" the procedure on a doll, or observe a "demonstration" on a doll. Ask about the availability of photo books, specifically for a particular procedure or treatment.
Hypnosis. With hypnosis, a professional (such as a psychologist or physician) guides the child into an altered state of consciousness that helps him or her to focus or narrow his or her attention, in order to reduce discomfort.
Imagery. Guiding a child through an imaginary mental image of sights, sounds, tastes, smells, and feelings can often help shift attention away from the pain. By creating images in the mind, a person can reduce pain and symptoms associated with his or her condition. Guided imagery involves envisioning a certain goal to help cope with health problems.
Prayer or meditation. In many faith traditions, one of the roles of prayer or meditation is to help with pain, fears, and uncertainty.
Distraction. Distraction can be helpful particularly for babies, by using colorful, moving objects. Singing songs, telling stories, or looking at books or videos can distract preschoolers. Older children find watching TV or listening to music helpful. Distraction shouldn't be a substitute for explaining what to expect.
Relaxation. Children can be guided through relaxation exercises, such as deep breathing and stretching, to reduce discomfort.
Other nonpharmacological pain management may use alternative therapies, such as acupuncture, massage, or biofeedback, to eliminate discomfort.
Each child experiences pain differently. It's important to discover the best method for pain control for your child prior to the onset of pain, and to give the child permission to use many varied resources in the treatment of his or her pain.