Physical Needs of the Dying Child
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 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 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 needs. Nutritional needs for the dying child 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 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.
Changes in elimination. Changes in elimination may also happen with a seriously ill or dying child. 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 his or her bowel or bladder.
Skin care. Skin care may also be a concern for the dying child. Nutritional status, elimination
problems, and lack of activity can all cause pain and skin breakdown. This can lead
to infection. Talk with your doctor about the using antibiotics. Infection can cause
fever. This can be uncomfortable. Medicines that reduce fever, such as acetaminophen,
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 bloodstream
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
Nasal symptoms. Secretions from the nose, mouth, and throat may be hard to manage in a terminally
ill child. 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 eliminate pain
from the dying process.
Discuss pain control choices and management plans before the child has significant
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 sensation 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 relatively 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 for pain
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.
How is pain managed with medicine?
There are many types of medicines and several methods used in giving them. Pain medicine
is usually given in one of the following ways:
Orally, by swallowing, or under the tongue. This method may be used if your child
By IV (intravenously)
Using a special 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.
What other ways can pain be managed?
Other ways to manage pain try to change thinking and focus to decrease pain. Methods
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. 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
Tour the room where the procedure will take place.
Teens may watch a video describing the procedure. Small children can "play" 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 him or her to focus or narrow his or
her 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 his or her 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
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 his or her pain.