1. Chapter 34 The Dying Child

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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

12. 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.

13. 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

14. 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

15. 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

16. 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

17. 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

18. 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

19. 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

20. 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

21. 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.

22. 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.

23. 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

24. 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

25. 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

26. 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

27. 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

28. 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

29. 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

30. 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

31. 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

32. 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

33. 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

34. 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

35. 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.

36. 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

37. 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

38. 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

39. 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

40. 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.

41. 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.