To meet the physical needs of a dying child, it's important to provide as much comfort as possible. The change from curing to caring means providing comfort to the child with the least invasive procedures, while maintaining their 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 or a bell or intercom available so your child will know where they are 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 needs. Nutritional needs may be hard to address. Nausea, vomiting, diarrhea, and reduced eating are common. High-protein shakes may be a good choice if the child is only able to eat or drink small amounts. A nasogastric or gastric tube is another choice 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 medicines and nutrition for digestion. Total parenteral nutrition is the delivery of nutrients, calories, protein, fat, and all caloric needs through a vein. It may be needed if the child has a lot of nausea, vomiting, and diarrhea. Talk with the healthcare provider or a dietician to learn about your child's options.
Bowel and bladder changes. Diarrhea, constipation, and incontinence are all possible. Care should be given to keep the child clean. It's also important not to embarrass a child who has recently become unable to control their bowel or bladder.
Skin care. Skin care may also be a concern. Nutritional status, elimination problems, and lack of activity can all cause pain and skin breakdown. This can lead to infection. Talk with your child's healthcare provider about using antibiotics. Infection can cause fever. This can be uncomfortable. Medicines that reduce fever, such as acetaminophen, may help.
Respiratory changes. Respiratory changes may happen from pneumonia, the effects of opioids, or the progression of the disease. Often the child will feel they can't "catch their breath." This is called air hunger. It can be frightening for the child. Less oxygen in the blood may also cause the child to have a seizure. Oxygen supplied through the nose or by a mask may help. Sometimes medicines can also ease the child's anxiety related to breathing troubles.
Nasal symptoms. Secretions from the nose, mouth, and throat may be hard to manage. You can use a suction device. Or repositioning the child may help drain the extra secretions. There are also medicines that help lessen the amount of secretions.
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 remove pain from the dying process.
Discuss pain control choices and management plans before the child has major pain. Fear of addiction to opioids is common among families. But it's important to understand that the ultimate goal is comfort. There's no evidence of addiction to pain medicines in dying children.
Pain is a feeling of discomfort, distress, or agony. Because pain is unique to each child, pain can't truly be judged by anyone else.
Pain may be short-term (acute) or long-term (chronic). Acute pain is severe and lasts a fairly short time. It's usually a signal that body tissue is being injured in some way. The pain often goes away when the injury heals. Chronic pain may range from mild to severe. It is present to some degree for long periods of time. It's advised to use medicine for the pain before it becomes too severe. If pain medicine isn't given for a long period of time, it may not be as helpful.
Many people believe that if a person has a terminal illness, they must be in pain. This isn't always the case. Pain can be reduced or even prevented. Pain management is important to discuss with your child's healthcare provider.
Pain may happen 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 will depend on your child’s symptoms and age. It will also depend on how severe the condition is.
To reduce pain, your child's healthcare provider will use medicines and other methods.
There are many types of medicines and several methods used in giving them. Pain medicine is often given in one of the following ways:
By mouth (orally), by swallowing. Or under the tongue if your child can't swallow.
By IV (intravenously) into a vein
Using a special tube (catheter) in the back
Through a patch on the skin
Examples of pain relievers include:
Mild pain relievers (analgesics)
Cream to put on the skin to numb the area (topical anesthetics)
Strong pain relievers (opioids)
Some children build up a tolerance to sedatives and pain relievers. Over time, doses may need to be increased or the medicines changed.
Other ways to manage pain try to change the child's thinking and focus to decrease their 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 them, their stress level will be much lower. To do this: :
Explain each step of a procedure in detail. Use 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 do the procedure and let your child ask questions ahead of time.
Tour the room where the procedure will take place.
Teens may watch a video describing the procedure. Small children can play that they are doing the procedure on a doll, or watch a "demonstration" on a doll. Ask about the availability of photo books, for any procedure or treatment.
Hypnosis. With hypnosis, a professional such as a psychologist or doctor guides the child into a changed state of consciousness. This helps them to focus or narrow their attention, 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 linked with their condition. Guided imagery involves picturing 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.
Alternative therapies, such as acupuncture, massage, or biofeedback, may also help eliminate discomfort.
Each child experiences pain differently. It's important to find the best method for pain control for your child before the pain starts. Give the child permission to use many varied resources in the treatment of their pain.