Chapter 34 The Dying Child

The Dying Child Accidents are the leading cause of death in children between the ages of 1 and 14 Cancer is the number one fatal disease in this age group Death of a child is the most difficult death to accept Caring for a family facing the death of their child is difficult Terminal illness creates a family crisis Nurses and other health professionals who can offer knowledgeable, sensitive care to these families help to make the remainder of the child’s life more meaningful and the family’s mourning experience more healing

The Nurse’s Reaction to Death and Dying Nurses are often uncomfortable with dying patients Every nurse needs to examine his or her own feelings about death and the reasons for these feelings Learning to care for the dying patient requires talking with other professionals, sharing concerns, and comforting each other in stressful times Caring for the dying is usually a team effort

The Child’s Understanding of Death Influences upon child’s understanding of death Developmental stage Do not comprehend finality of death until preadolescence Open, honest support with child’s anxieties restores child’s trust and comfort Cognitive ability Family emotions signal trouble Life experiences: Death of pet or family member

The Child’s Understanding of Death (cont.) Developmental stage Infants, toddlers Infants and toddlers have little understanding of death Questions are best answered simply, honestly Infant’s or toddler’s own death is approaching Family caregivers can be encouraged to stay with the child Provide comfort, love, security Maintaining routines as much as possible helps to give the toddler a greater sense of security

The Child’s Understanding of Death (cont.) Developmental stage (cont.) Preschool children Egocentric thinking View death as a type of sleep Magical thinking also plays an important part in the preschooler’s beliefs about death Preschool child may view personal illness as punishment for thoughts or actions Strategy: Provide security and comfort by staying with child as much as possible

The Child’s Understanding of Death (cont.) Developmental stage (cont.) School-aged children 6 or 7 years old is still in the magical-thinking stage, child views death in the same way as preschooler About 8 or 9 years of age, children gain concept that death is universal, irreversible Death becomes personified When faced with prospect of own death, school- aged children are usually sad

The Child’s Understanding of Death (cont.) Developmental stage (cont.) School-aged children (cont.) Vocal aggression Presence of family members and maintenance of relatively normal routines help to give the child a sense of security Strategy: Assist to voice anxiety, provide outlet for aggressive feelings

The Child’s Understanding of Death (cont.) Developmental stage (cont.) Adolescents Have an adult understanding of death but feel that they are immortal Diagnosis of a life-threatening or terminal illness creates a crisis for the adolescent Adolescent with terminal illness may express helplessness, anger, fear of pain, hopelessness, and depression

The Child’s Understanding of Death (cont.) Developmental stage (cont.) Adolescents (cont.) Strategies Assist to present themselves as attractively as possible to their peers Provide opportunities to acknowledge their impending death Encourage: Express fears, anxieties; ask questions Participate in usual activities as possible

Question An 8-year-old child is actively dying from leukemia. What could you, as the nurse, do to help this child and his or her family? a. Recognize that vocal aggression is an expression of the child’s fear b. Recognize that vocal aggression is an expression of the child’s sadness c. Teach the family to maintain discipline with the child d. Teach the family to give the child whatever they want

Answer a. Recognize that vocal aggression is an expression of the child’s fear Rationale: Children may fear the loss of control that death represents to them and express this fear through vocal aggression. Family caregivers and nurses must recognize this as an expression of their fear and avoid scolding or disciplining them for this behavior.

The Child’s Understanding of Death (cont.) Experience with death and loss Every death makes an impression Family caregivers should discuss death with children Many books are available to help a child deal with loss and death Western philosophy

The Child’s Understanding of Death (cont.) Awareness of impending death Children know when they are dying Some family caregivers insist that a child not learn the truth about his or her illness Openness, honesty in communication with a dying child provides opportunities for health care staff Meet the child’s needs more effectively Dispel misunderstandings Facilitate resolution of problems or unfinished business between child and family

The Child’s Understanding of Death (cont.) Awareness of impending death (cont.) Completing unfinished business may mean Spending more time with the child Helping siblings to understand the child’s illness and impending death Giving family members a chance to share their love with the child

The Child’s Understanding of Death (cont.) Awareness of impending death (cont.) Child should be given information desired gently, directly, understandably Honest, specific answers leave less room for misinterpretation, distortion Adolescents may need you to be an advocate for them

The Family’s Reaction to Dying and Death Death of a child sends feelings of shock, disbelief, guilt throughout family When death is expected, family begins to mourn in anticipation of the death In cases of accidental or sudden death, family has no time to anticipate or begin grieving the loss of the child Grief may last longer, be more difficult to resolve Grief for death of a child is not limited, may last years Support resources may be needed

The Family’s Reaction to Dying and Death (cont.) Stages of grief First four stages may occur repeatedly, not necessarily in order Anger Depression Ambivalence Bargaining Acceptance: Nonrepeating final stage

The Family’s Reaction to Dying and Death (cont.) Family caregivers’ reactions Terminal illness Family may face decisions about the child’s physical care, as well as learning to live with a dying child Encourage family to talk to their child about dying May go through a grieving process repeatedly Support may be helpful Encourage family schedule normalcy, as possible

The Family’s Reaction to Dying and Death (cont.) Family caregivers’ reactions (cont.) Terminal illness (cont.) Over protectiveness Family members dread child’s approaching death, fear child will be in great pain or die when they are absent When death comes, it is perfectly appropriate to share family’s grief Family may want to hold the child to say a final goodbye

Question Tell whether the following statement is true or false. Health care staff can meet the dying child’s needs more effectively if the family caregiver allows the child to know that he or she is dying.

Answer True Rationale: If caregivers permit openness and honesty in communication with a dying child, the health care staff can meet the child’s needs more effectively, dispel misunderstandings, and see that the child and the family are able to resolve any problems or unfinished business.

The Family’s Reaction to Dying and Death (cont.) Family caregivers’ reactions (cont.) Sudden or unexpected death Family is unable to prepare for the death Family may have excessive guilt, remorse for something they felt they left unsaid or undone Family must be given the opportunity to be with, see, and hold child to help with closure of child’s life

The Family’s Reaction to Dying and Death (cont.) Family caregivers’ reactions (cont.) Sudden or unexpected death (cont.) Prepare family for viewing child Number of decisions may be necessary Organ donation; funeral arrangements; autopsy Violent or unexplained deaths Family needs adequate information and support throughout these difficult decisions

The Family’s Reaction to Dying and Death (cont.) Child’s reaction Child who has a terminal illness also experiences anticipatory grief Sadness, depression are common Important for child to have opportunities to talk Fears, anger, and concerns Express feelings about joys, happiness of life

The Family’s Reaction to Dying and Death (cont.) Child’s reaction (cont.) Child needs support, honesty, and answers to questions regarding illness, treatment, prognosis May fear that pain is a part of death Religious and spiritual beliefs Reassure child they won’t be alone at time of death

The Family’s Reaction to Dying and Death (cont.) Child’s reaction (cont.) Excellent nursing care is required As death approaches, internal body temperature increases Just before death, child who has remained conscious may become restless, followed by a time of peace and calm Keep family members informed

The Family’s Reaction to Dying and Death (cont.) Siblings’ reactions May feel confused, lonely, frightened about sudden loss of their sibling Siblings resent attention given to the ill child, are angry about family disruption Reaction varies according to the sibling’s developmental age and parental attitudes, actions

The Family’s Reaction to Dying and Death (cont.) Siblings’ reactions (cont.) Funeral services Current thinking among many health professionals supports the presence of sibling(s) May be encouraged to leave a token of love and goodbye with the child Dealing with realities of sibling’s death openly is likely to be more beneficial

Settings for Care of the Dying Child Hospice care St. Christopher’s Hospice in London Many communities now have hospice programs Children’s Hospice International, founded in 1983, is an organization dedicated to hospice support of children

Settings for Care of the Dying Child (cont.) Home care Caring for dying patients at home, young or old, has become increasingly common Factors contributing to caring for a dying child at home include Cost concerns: Hospitalization; nonmedical expenses (travel, housing, etc.) Stress from repeated family separations Loss of control over: Care of child, family life

Settings for Care of the Dying Child (cont.) Home care (cont.) Advantages: Families feel home environment Draws family closer Helps to reduce guilt that often is a part of bereavement Disadvantages Costs not covered by insurance Difficult emotionally and physically

Settings for Care of the Dying Child (cont.) Hospital care Limitations: Costly Advantages Potential support from other families in similar circumstance Hospital is still the culturally accepted place to die Patients and families: Have rights, can exert some control over circumstances

Question You are caring for a family whose 6-year-old child has just died after being hit by a car. The child died en route to the hospital, and the body shows multiple signs of violence. What should you do for the family? a. Let the family see the child but keep all but the child’s head covered with a sheet b. Encourage the family not to look at the child c. Encourage the family not to spend time with the child’s body d. Prepare the family for what the child looks like

d. Prepare the family for what the child looks like Answer d. Prepare the family for what the child looks like Rationale: Family must be given the opportunity to be with, see, and hold the child to help with closure of the child’s life. Prepare the family for seeing the child.

The Role of the Nurse Plays an important role Providing physical care for dying child Providing emotional care for both child and family Provides clear, simple information Encourages child, family Share feelings, reactions to the situation Ask questions Supports

The Role of the Nurse (cont.) Nursing process for the dying child Assessment: Performed by health care team Components Child’s developmental level, influence of cultural and spiritual concerns Family’s support system Present indications of grieving (e.g., anticipatory grief) Family interactions among family members Unfinished business

The Role of the Nurse (cont.) Nursing process for the dying child (cont.) Selected nursing diagnoses Acute pain; anxiety Compromised family coping; powerlessness Outcome identification and planning Major goals: Minimizing pain; diminishing feelings of abandonment by peers and friends; relieving anxiety about the future Family goals: Helping to cope with the impending death; identifying feelings of powerlessness

The Role of the Nurse (cont.) Nursing process for the dying child (cont.) Implementation Relieving pain, discomfort Providing appropriate social interactions Easing child’s anxiety Helping the family cope Helping the family feel involved in child’s care Evaluation: Goals and expected outcomes

Question Tell whether the following statement is true or false. The assessment is performed by the health care team and only covers the family’s support system, present indications of grieving (e.g., anticipatory grief), and interactions among family members.

Answer False Rationale: The assessment is performed by the health care team and covers the child’s developmental level, the influence of cultural and spiritual concerns and the family’s support system, present indications of grieving (e.g., anticipatory grief), interactions among family members, and unfinished business.