About End of Life

Psychological Needs of a Dying Child

2011-05-06T04:18:54Z

The child with a terminal illness has the same need for love, emotional support, and normal activities as any person facing death. Love, respect, and dignity are all important factors in caring for a dying child. The following psychosocial needs of the dying child should be considered:

Time to be a child
Engage in age-appropriate activities for children, such as age-appropriate play.
Communication/listening/expression of fears or anger
The child should have someone they can talk to about his/her fears, joys, angers, or to simply talk about the weather. Being alone at the time of death is a common fear for dying children. Listening to them is the most important way to help. Accepting that the child does not want to talk about dying is also important; the parent's needs are often greater and they should seek out someone they can talk to. If "big" issues are not discussed, we should never underestimate the importance of a non-judgmental and caring presence.
Depression and withdrawal
Independence and control need to be given to the dying teenager whenever possible. Many physical changes that occur before death can make the child very dependent for even simple tasks. Loss of control and depression may cause withdrawal. It is important to validate these feelings without forcing communication.
Spiritual needs
Spiritual and cultural needs should be respected and provided for. Rituals which allow the child and his/her family to remember; give thanks and express gratitude; trust God's presence in the experience for both the child who is dying and those who will grieve; and say goodbye are each ways to honor the transition from getting well to letting go or dying. What and how much to tell a child is dependent upon the culture and ethnic background of the family.
Wish fulfillment
Some organizations provide funding for a "wish" for seriously and/or terminally ill children. If possible, help the child decide what they would most like to do before they die. A shopping spree, Disney World, a new computer, or meeting a famous star are examples of children's "wishes." If the child is able to actively participate, all measures should be provided for them. These wishes often create wonderful memories for families of children with a terminal illness.
Permission from loved ones to die
Some children seem to require "permission" to die. Many children fear their death will hurt their parents and leaving them behind will make them very sad. It has been observed that children will cling to life through pain and suffering until they get "permission" from their parents to die. This has been described in the dying adult, as well. Sometimes, parents are not always the best persons to give this permission. Someone close to both the parents and the child may be more appropriate.
Comfort in knowing they are not alone in the dying process
The dying child most often wants reassurance that they will not die alone and that the/she will be missed. Parents and loved ones need to comfort the child and tell him/her that, when death occurs, they will be right at the bedside. This is often a difficult promise to keep, but every measure should be made to be holding or touching the child when he/she dies. The presence at death benefits both caregivers and the child.
Limit setting
Parents need to continue setting appropriate limits on a child's behavior and not let their guilt or grief inhibit their normal parenting, the consequence of which can be children becoming or feeling out of control.

This information was taken directly from the Yale Medical Group http://www.yalemedicalgroup.org/stw/Page.asp?PageID=STW027387 in an effort to help support seriously ill children and their families.

Visiting a child at the end of her life

2011-05-04T17:47:40Z

Hello,

My daughter is going to visit another child that is facing end of life due to brain cancer. Sally is 12 yrs old and likes others to read to her. Do you have any books that would be appropriate or any you know that others have enjoyed. If you have any suggestions for gifts ect we would greatly appreciate it. I am also concerned about how to discuss the deteriorating condition to Becka( my daughter), about her “pen pal” Sally. She has not met Sally face to face before, but has exchanged cards, letters in the past. She is the granddaughter of my mother’s good friend. Thanks for your response.

The Dying Process

2011-04-19T14:15:05Z

The body goes through many changes in the dying process. Knowing the common symptoms of impending death may help families and children be prepared for them when they occur. In some cases, the dying process can be very long. Understanding the physical and mental changes the body goes through as death occurs, may help alleviate some fears and misconceptions about death. Always discuss any concerns or questions with your child's physician.

The following is a list of common symptoms that death is approaching. However, each child may experience symptoms differently. Symptoms may include:

Changes in respirations may occur. Slow and fast respirations or long periods without a breath are common in the dying child. Moaning may occur with breaths and does not necessarily mean the child is in pain.
Respiration may be noisy from secretions the child is unable to clear from his/her throat or lungs.
Physical disfigurement may occur from a progressive tumor.
The skin color usually changes to pale, bluish, mottled, or blotchy. The changes occur due to a decrease in oxygen and the body's circulation slowing down.
The child may suddenly become incontinent (unable to control bowel and/or urine elimination).
Mental confusion or decreased alertness may occur just prior to death.

Death has occurred when the child's heart is not beating and there are no signs of breathing.

Care of the child at the time of death:

Parents need to know that when a child dies at home in hospice care, that it is not an emergency. (If paramedics are called, according to law, they must attempt to resuscitate the child, even if it is against the families' wishes.)

The family is provided as much time as needed before the child is removed from the home or hospital setting. This time is for the privacy of the family and loved ones and may include: holding, bathing, and/or dressing the child, or spiritual or cultural rituals.

Even when death is anticipated, the family will be in shock and will be grieving. Funeral and autopsy arrangements, made prior to the time of death, will need to be processed.

This text has been copied directly from the Children's Hopsital of Pittsburgh: http://www.chp.edu/CHP/P03054

Physical Needs of the Dying Child

2011-04-19T14:04:14Z

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/her privacy and dignity. A terminally ill child has many of the same needs as any seriously ill child, including the following:

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/night confusion. Keep a night light on and/or a bell or intercom available so your child will know where he/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 upon 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.
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 is also important not to embarrass or humiliate a child that 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 skin breakdown and/or pain. 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 they are unable to "catch their 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 that 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 is important to understand, however, that the ultimate goal is comfort, which means taking appropriate measures to assure the child is free from pain. There is 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 cannot truly be judged by anyone else.

Pain may be acute or chronic. Acute pain is severe and lasts a relatively short time. It is 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 is not 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, they must be in pain. This is not 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 non-pharmacological.

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 the following:

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)
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 non-pharmacological pain management?

Non-pharmacological pain management is the management of pain without medication. This method utilizes ways to alter thinking and focus to decrease pain. Methods include the following:

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. Ways to accomplish this include:
- Explain each step of a procedure in detail, utilizing 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/her to focus or narrow their 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 their condition. Guided imagery involves envisioning a certain goal to help cope with health problems.
prayer or mediation
In may 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 should not 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 non-pharmacological pain management may utilize alternative therapies such as acupuncture, massage, or biofeedback, to eliminate discomfort.

Each child experiences pain differently. It is 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/her pain.

This text was copied from the Children's Hospital of Pittsburgh.http://www.chp.edu/CHP/P03051

Psychosocial Needs of the Dying Child

2011-04-19T06:12:14Z

Time to be a child
Engage in age-appropriate activities for children, such as age-appropriate play.
Communication/listening/expression of fears or anger
The child should have someone they can talk to about his/her fears, joys, angers, or to simply talk about the weather. Being alone at the time of death is a common fear for dying children. Listening to them is the most important way to help. Accepting that the child does not want to talk about dying is also important; the parent's needs are often greater and they should seek out someone they can talk to. If "big" issues are not discussed, we should never underestimate the importance of a non-judgmental and caring presence.
Depression and withdrawal
Independence and control need to be given to the dying teenager whenever possible. Many physical changes that occur before death can make the child very dependent for even simple tasks. Loss of control and depression may cause withdrawal. It is important to validate these feelings without forcing communication.
Spiritual needs
Spiritual and cultural needs should be respected and provided for. Rituals which allow the child and his/her family to remember; give thanks and express gratitude; trust God's presence in the experience for both the child who is dying and those who will grieve; and say goodbye are each ways to honor the transition from getting well to letting go or dying. What and how much to tell a child is dependent upon the culture and ethnic background of the family.
Wish fulfillment
Some organizations provide funding for a "wish" for seriously and/or terminally ill children. If possible, help the child decide what they would most like to do before they die. A shopping spree, Disney World, a new computer, or meeting a famous star are examples of children's "wishes." If the child is able to actively participate, all measures should be provided for them. These wishes often create wonderful memories for families of children with a terminal illness.
Permission from loved ones to die
Some children seem to require "permission" to die. Many children fear their death will hurt their parents and leaving them behind will make them very sad. It has been observed that children will cling to life through pain and suffering until they get "permission" from their parents to die. This has been described in the dying adult, as well. Sometimes, parents are not always the best persons to give this permission. Someone close to both the parents and the child may be more appropriate.
Comfort in knowing they are not alone in the dying process
The dying child most often wants reassurance that they will not die alone and that the/she will be missed. Parents and loved ones need to comfort the child and tell him/her that, when death occurs, they will be right at the bedside. This is often a difficult promise to keep, but every measure should be made to be holding or touching the child when he/she dies. The presence at death benefits both caregivers and the child.
Limit setting
Parents need to continue setting appropriate limits on a child's behavior and not let their guilt or grief inhibit their normal parenting, the consequence of which can be children becoming or feeling out of control.