End-of-Life Care for Children and Their Families

Facing death with a child and the family is not an easy task. Nurses who become involved with dying children often express a sense of gratitude to have had the privilege of the experience. This is an area where rules fall short and patience may become stretched. While it can be tiring, discouraging, and sad, it also requires a profound look at acceptance. Nurses who deal with the dying child and his or her family undoubtedly have a special gift. Families will never forget the care provided to their dying child by their nurse.

Self-Exploration

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One of the most important, if not the most important, preparations for dealing with the dying child is self-exploration. Attitudes about life and death affect our nursing practice. Those attitudes and emotions can form barriers to effective communication unless they are recognized and released. How nurses have or have not dealt with their own losses affects their ability to relate to patients. Nurses must recognize that coping is an active and ongoing process. Constructive outlets such as exercise are critical for the nurse who cares for dying children. An active support system consisting of nonjudgmental people (professional or personal) who are not threatened by natural expressions of emotions is crucial. Taking time off periodically may be necessary. Even attending the child’s funeral may help the nurse in coping and does not detract from professionalism (Hockenberry and Wilson, 2009). Proper channeling of these feelings can be a valuable part of the nurse’s empathetic response to others.

Legal and Ethical Issues Related to Death

Legal issues related to death revolve around what is made a law by a legally sanctioned group. Legal issues include informed consent, role of a legal guardian, a Do Not Resuscitate (DNR) order, organ donation, and so on. In addition, each state’s Nurse Practice Act regulates the practice of nursing. An ethical issue relates to what is good or moral. Ethical principles include respect for autonomy, benevolence, nonmaleficence, veracity, confidentiality, fidelity, and justice (Table 22-1). For example, life-sustaining medical treatment (such as a ventilator) may have positive and/or negative implications; ethical principles may be used to evaluate the situation. Use of these principles aids the health care team and the family to provide the dying child with a peaceful and dignified death. Through the use of ethical principles, the unique needs of the child and family can be kept in perspective, as can assisting in resolving dilemmas that can arise during these challenging times.

Table 22-1

Ethical Principles and Definitions

PRINCIPLE	DEFINITION
Respect for autonomy	The patient’s right to self-determination and decision making
Benevolence	Doing what is good, meeting needs, balancing benefits with risk and harm, providing relief of pain and suffering
Nonmaleficence	Doing no harm
Veracity	Being honest, telling the truth
Confidentiality	Respecting privileged information; preserving rights, privacy, and dignity
Fidelity	Keeping promises
Justice	Treating fairly, ensuring distribution of resources

Palliative Care

Palliative care is the care and comfort given to a dying person. Palliative treatment focuses on the “relief of symptoms (e.g., pain, dyspnea) and conditions (e.g., loneliness) that cause distress and detract from the child’s enjoyment of life” (American Academy of Pediatrics, 2007). Nurses provide palliative care so that the individual and the family experience a comfortable, supported, and dignified end of life. Palliative care aids the child who is experiencing death and the family to feel cared for and supported and to have this care performed in the most dignified way. The goal of palliative care is to “add life to the child’s years, not simply years to the child’s life” (American Academy of Pediatrics, 2007).

The American Nurses Association Code of Ethics for Nurses (2001) does not support euthanasia or “mercy killing” by nurses. However, the role of the nurse is to relieve symptoms in the dying patient even if those interventions involve the risk of hastening death (Hockenberry and Wilson, 2009).

When end-of-life care is needed for a child, it brings with it a great deal of emotional feelings. As parents and primary caregivers to a child, parents expect their children to outlive them. In the world of pediatric nursing, nurses assume that their time will be spent on curing and healing in the pediatric population. Nurses, however, must also recognize the value of caring for the child who is dying. The pediatric nurse has much to gain from working with the dying child and assisting the family in confronting issues they must face. In looking back, parents—and indeed, often the child—will look back and recall a time when living with the disease changed to preparing for death. Health care providers who work with children recognize that open and honest communication is the best approach. Broaching this subject with a child is difficult for all concerned. It is an issue that requires communication skills, empathy, and many discussions. The parent and pediatrician may consider the child’s understanding of and prior experience with death, the family’s religious or cultural beliefs, the developmental level of the child, how the child copes with sadness and pain, the disease experience, and the circumstances expected (American Academy of Pediatrics, 2007). Box 22-1 discusses some additional issues to consider before the discussion of death with a child.

Box 22-1 Key Psychosocial Issues in End-of-Life Care

• Death, like birth, is a part of the natural order of things. Some die sooner than others.

• All of us have special feelings for those with whom we share our lives. There are many emotional feelings to express.

• Death is also a separation from family, friends, and siblings. The child who dies is not the only one who loses.

• The loss is never complete. Religion plays an important role in emphasizing that the child still lives on in spirit. The memory of the child is always in our hearts.

• Assure the child that he or she will not be alone in death or after death. It is very important for the child to know that the parents are there for support and love.

• At the time of death, everyone needs to know they made a difference and did all they could do with their lives.

• Assure the child that crying is acceptable and feelings of sadness may occur. It is equally all right to feel angry and resentful. Children should not feel pressured to discuss their illness. However, if a child chooses to express feelings, the support of an adult listener should be available.

• Assure the dying child that silence is acceptable, and no matter how the child chooses to express feelings, or how confused or silly it may sound, it is acceptable.

• Reassure the child that when death comes, it will not hurt. Children are very concerned about pain. They need to be reassured that the health care team will reduce their pain to a minimum.

• When someone dies, there is a need to say goodbye and to know that the arms and love of the family will surround them.

• Give the child permission to die. Saying it is “okay” to go helps put the child’s mind at ease.

Communication

The three main ingredients in communication are words, tone of voice, and body language. The most powerful of these is body language, followed by tone of voice, and then by the words that are actually said. If words are said with an angry tone of voice and with arms crossed, the person receiving this message perceives the sender as angry regardless of the words that are said. Children are keenly adept at reading body language and tone of voice.

For the child and family to be supported, a multidisciplinary approach is needed. A team approach is most beneficial, particularly one that allows the individual and the family to have input into the decisions that are made. At a minimum, the team includes a physician, nurse, social worker, spiritual advisor, and child life specialist. Needs that should be considered center around physical, psychological, social, and spiritual areas. Table 22-2 lists factors for each of these.

Table 22-2

Physical, Psychological, Social, and Spiritual Needs

AREA	NEEDS
Physical	Pain management
	Management of symptoms
	Comfort measures
Psychological	Anxiety/stress
	Guilt/anger
	Depression
	Fear of dying
	Grief/bereavement
Social	Financial concerns
	Insurance concerns
	Role and relationship changes
	Social isolation
Spiritual	Meaning
	Religiosity
	Sense of despair

In providing care to the dying child and family, the members of the health care team should see, as a result of their efforts, a reduction of symptoms of pain or discomfort related to the disease; appropriate coping of both the child and the family; satisfaction of the child and family with the care that is being given; a sense of open and honest communication with all involved in the care; the dealing with and resolving of fears, grief, and anger; planning for future events such as the funeral; availability of quality of time for the child and family to enjoy; spiritual problems addressed and reconciled; and the family’s grief being resolved after the death has occurred. This care involves a lengthy period of time and may be ongoing. There is so much to consider, and time becomes a friend as well as a foe.

Each child, like each adult, approaches death in an individual way, drawing on limited experience (Table 22-3). Nurses must become well-acquainted with children and view them within the context of their families and social culture. Children’s anxiety about death often centers on symptoms. They fear that the treatments necessary to alleviate their problem may be painful, as indeed some of them are. Their sense of trust is precarious. It is important that nurses be honest and inform children of what is about to be done and why it is necessary. Information should be shared in terms that children can understand. Encourage expression of feelings, such as by saying “You seem angry.” Allow sufficient time for a response. It is important that children be allowed to have as much control over what happens to them as possible. This is fostered by including them in decisions that concern their welfare. Do not, however, offer a choice when there is none. Children often communicate symbolically. Listen to what they are saying to you, to their toys, and to other children. Provide crayons and paper. Drawing feelings is often therapeutic.

Table 22-3

Children’s Concepts of Death

AGE	CONCEPT
Infant-toddler	Little understanding of death
Infant-toddler	Fear and anxiety over separation
Preschooler	Something that happens to others
	Not permanent
	Curious about dead flowers and animals
	Magical thinking
	Believe that “bad thoughts” may come true, harbor guilt
	Believe their thoughts can cause death
	Death is reversible
	Will not happen to them
Early school years	Death is final
	Think they might die, but only in the distant future
	May understand death as a “person”
	Death is universal
	Suspect parents will die “someday”
	Fear of mutilation
Preadolescent-adolescent	Able to understand death in a logical manner
	Understand death is universal
	Understand death is permanent
	Fear of disfigurement and isolation from peers