1. Impact of Death and Dying on the child and family.

2. Children's conception of death Infants and toddlers ► No significance to a child under 6 months of age ► After parent-child bonding has taken place the loss can be significant although it can not be verbalized. ► Effect is by the change in their life style. Preschool Children ► Death is temporary and reversible, that one can come back from the dead, like a type of sleep ► Believe that their thoughts can cause death  Feel guilt and shame based on this, death of someone is due to their bad thoughts or behavior towards that person. ► Very egocentric ► Have some understanding of death ► No understanding of the finality of death. School aged child ► Still associates their actions by causing death ► Will understand the finality of death at this stage ► Fear the mutilation of death ► Death seen as evil (bogey man, demon, monster, etc.) ► By age 9 or 10 have an adult understanding of the concept of death Adolescent ► Mature understanding of death ► Still feel guilt & shame about death

3. Children’s reaction to death Infant and toddlers ► May continue to act as though the person was still alive ► As they get older they can let go of the person ► Their main reaction to death is the disruption of their normal lifestyle/ routine. ► React strongly to parental stress and anxiety ► React by crying, sleeping more, eating less ► They are aware that someone is missing, may experience separation anxiety ► Toddlers may get very fearful, become more attached to parent, cease walking and talking Preschool children ► If it is them that are seriously ill, they feel it is a punishment for something they did wrong ► Overwhelming guilt can occur with the death of a sibling ► Greatest fear of death is separation from their parents ► Behavioral clues: laughing, joking, being disruptive to get attention, regression in developmental skills,. ► Nightmares, bowel and bladder problems, crying, anger out of control type behaviors.

4. School aged child  Understand more about death & have more fears ► Why? ► How did it happen? ► Can they get it? ► Can anyone else they love get it and die?  Their biggest fear is the unknown  Impending death of someone close is a threat to their safety  Fear will be manifested through verbal means  Want to know everything about funeral, what will happen to the body.  Still believe that death is a punishment for something they did wrong. Adolescent  Have the most difficulty dealing with death in this age group  Concerns are with the present (not future or past)  Feel alienated from peers & parents  Loneliness, sadness, fear, depression, acting out behaviors: risk taking behaviors: promiscuity, delinquency, suicide attempts, drug and alcohol use.

5. Issues in helping the dying child Nurses (in addition to other members of the health care team) must attend to the immediate physical needs of the dying child ► Pain control is the number one priority ► Most children are under medicated for multiple reasons, the dying child is in pain and should have COMPLETE PAIN RELIEF ► Minimize physical discomfort and symptoms ► If possible decrease side effects of treatments ► The child must know that they can ask their parents/nurse for anything (physical comfort/pain relief/etc..) ► Children should be informed of their disease and prognosis at an age appropriate level, if terminally ill they should be told. ► If parents do not want child to know their diagnosis and prognosis, respect their wishes but strongly encourage and facilitate a discussion with the ill child. ► If a child asks if they are dying, they need to be told the truth ► The terminally ill child must be allowed to (and encouraged) to have hope go on with their lives

6. Nursing interventions for the child Terminally ill child: ► Pain control ► Allow child to have as “normal” of a life as possible ► Allow child to verbalize feeling of anger, sadness, and grief ► Provide mouth care before eating so eating will be pleasurable. ► Answer all questions honestly in a developmentally appropriate manner ► Provide small frequent meals and snacks ► Let the child eat or drink anything they request ► Frequent turning and positioning. Coordinate with doses of pain medication to decrease discomfort. When death is imminent: ► Pain control ► Limit care to essentials ► When asking questions only ask questions that can be answered with yes/no answers. Speak clearly (no whispering) ► Avoid repeated vital signs (if needed only assess RR/HR) ► Avoid excessive light and noise ► Continually talk to child especially when unconscious

7. Issues in helping the parents of a dying child The parents, grandparents and siblings of a terminally ill child will go through the multiple stage of death and dying as described by Elizabeth Kubler- Ross:  Denial  Anger  Bargaining  Depression  Acceptance

8. Nursing Intervention for the parents ► Provide opportunity of parents to express emotions ► Encourage parents to discuss the prognosis with the dying child, even if they are not told they are dying most children know they are seriously ill. ► Involve parents in every aspect of the child's treatment, (every case management meeting, rounds etc.) ► Allow them to perform as many physical tasks as they feel comfortable doing (changing beds, bathing/grooming/feeding/ giving PO meds, etc.) ► Advocate for the rights of the parents to make decisions for their child ► Support ► Referral to Make-A-Wish for the child (if appropriate) ► Referral to support group for parents, grandparents, siblings ► Assist the parents in making home care arrangements in a timely manner ► Assist parents in finding financial resources ► Encourage parents to go on with the daily routine of their lives (prolonged hospitalization). ► Assist parents in building their network of support ► Arrange for appropriate spiritual care. ► Discuss with parents involvement of siblings ► Provide for the physical needs of parents (bedding/toiletries/food/beverages) ► Encourage parents to spend as much time as possible with the child. ► Encourage parents to have a beloved family member or friend stay with the child when they cannot be there. ► If death is imminent encourage parents to hold child ► After the death of the child, allow parents to help with care. (if they desire to do so) ► immediate referral to compassionate friends

9. Interventions for siblings The siblings of a a dying child are often neglected. Parents have limited amounts of time and energy and have been stretched beyond their normal emotional limits. All of their energy is focused on the ill child, in addition to the sick child there are frequently multiple concerns about finances. ► Provide opportunities for siblings to express emotion, fear and anger ► Try to include them in in some planning of care (especially when planning home care) ► Give them accurate, timely, developmentally appropriate information about their sibling. ► Be honest with them at all times ► Answer their questions honestly in a developmentally appropriate manner. ► If they ask if their brother or sister is dying, be honest. ► Refer to sibling support groups ► Timely referral to psychological counseling if needed

10. Palliative care A multisystem approach focused on pain control and control of symptoms rather than on a cure or on prolonging life. The focus and goals of palliative care is on allowing the patient to die as peacefully as possible, surrounded by those they love. The most important concepts of the palliative care of children are:  Pain control  Relieving symptoms of both disease and treatments  Giving the child accurate and honest information  Giving the child age appropriate responses to their questions about their treatment, prognosis and their death.  Support for the child and family by Palliative care team (nurses, MD’s, social work, child life therapist, psychologist) Types of Palliative care available to children: ► In a hospice: unfortunately there are few Pediatric Hospices available, and only one in NYC area (on eastern end Long island, mainly for the chronically ill) ► At home with a home attendant and 8-12 hours of Nursing care