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 Adolescent
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:
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

9. Helping parents 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

10. 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

11. Siblings may feel isolated and displaced during time their brother or sister is dying. Parents devote the majority of their time to the dying child and siblings may become resentful and then feel guilty or ashamed of such feelings. Siblings need to be included, as they are also grieving, and parents must spend some time with the siblings while someone else sits with sick child. Siblings must be given a chance to say good-bye to their brother or sister.
Siblings may have difficulty resolving their grief, feelings of guilt and blame, over activity with aggressive and destructive behaviors, compulsive care giving and persistent anxiety, excessive clinging to the parents and problems at school or delinquency. They may also fear another family member dying, or their own death. Even children as young as 2 years have been known to experience survivor guilt.

12. 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

13. Grief and Mourning
Acute grief develops within hours or days; it is a definite syndrome with psychological and somatic symptoms that cause acute distress. However, it is a necessary and expected reaction for satisfactory resolution of the acute grief. Mourning may continue for years, with periods of acute intensification during the first years. However, parents who still experience acute, intense symptoms after a year may need help from an expert in grief and bereavement counseling. Others often feel that family should have resolved their grief, and therefore, family grieves alone. Marital stress may occur as a result of the loss of a child as differing grieving styles make communication between parents difficult.

14. Care of the terminally ill child
When child is faced with a potentially long and terminal illness, best possible care must be provided to the child and family physically, psychologically, emotionally and spiritually.
The child needs honest and accurate information concerning his illness and treatment in clear, simple language. This generally occurs over time. Age and developmental level of child must be considered. Some families request that child not be told he is dying, even if child asks. Children, however, are very perceptive and often realize that something is seriously wrong and it involves them. (See Wong, pg ).
When death is sudden and unexpected, the shock and grief of family over loss of the child is overwhelming. Parents are not prepared to deal with emergency services and intensive care units in the case of sudden trauma, and even when illness has been prolonged, ex, cancer, they are not prepared for the reality that their child will die.
When cure is no longer possible, or injuries are fatal and/or result in brain death, family needs to be given options and information to decide how they want to spend the remaining time with their child. It is important that families know that even though cure is no longer possible, active care will continue.

15. Both parents and health professionals are concerned that continuing treatment that will cause pain and suffering but will also prolong life may not be ethically right. The Ana’s Code for Nurses does not permit a nurse to actively take part in euthanasia, but does permit interventions to relieve symptoms, even when they may hasten the risk of death, ex. morphine for pain relief.
Health care staff, physicians and family need to discuss options, family needs to know that it is their right to stop treatment when cure is not reasonably possible and focus on comfort and quality of life. Physicians and nurses have a very difficult time admitting defeat in the face of a child with a terminal illness and feel a sense of failure at not being able to save a child. When open discussion is possible, decisions can be made regarding “do not resuscitate” orders.

16. Options include hospital or home care and hospice care
Options include hospital or home care and hospice care. There are very few pediatric hospice programs, however. Child should be allowed to remain with those they love and with whom they feel secure. Sometimes, child lives longer than expected and can go home to be with siblings etc. Often, even children brought home to die will ultimately die in the hospital because of sudden, acute pain or respiratory distress.
Besides pain, terminally ill children may also experience vomiting, dyspnea, extreme fatigue, depression, confusion and variety of symptoms caused by primary illness. May need high doses of opioids to be pain free. Nurses and parents should not fear addiction.

17. Terminally ill children who die at home usually are surrounded by family, beloved pets and possessions around them. The physical process of dying can be very distressing to parents, as child often becomes less alert in days prior to death. In the final hours of life, respirations become labored, with deep breaths followed by longer periods of apnea, Cheyne-Stokes breathing. This is not distressing to the child, and parents need reassurance that it is a normal part of the dying process.
After the death, family should be allowed to remain with the body and hold or rock the child if they desire. Nurse should remove all tubes and medical equipment from the body and allow parent to participate, if they choose, in preparations such as bathing and dressing child. Siblings need to be included in funeral preparations and burial services, however, they need to be prepared for what to expect, how dead child will look, what happens at a funeral, etc. If parents are too overcome with grief, someone else who is trusted by the children can prepare them.

18. Organ/Tissue Donation and Autopsy
Many states have mandatory requests for organ/tissue donation when a child dies. For some families, this is a positive act benefiting another human being despite the loss of their child. Topic should be discussed before death occurs, if possible. Healthy children who die unexpectedly from traumatic injuries causing brain death are excellent candidates for donorship. Children who died from cancer, chronic disease or infection or who suffered prolonged cardiac arrest may not be acceptable candidates. Organ removal does not mutilate or desecrate the body or cause any suffering. In the case of unexplained or violent death or suicide, law mandates autopsy, or family may request an autopsy.

19. Pediatric Nurses dealing with the death of children
Nurses also need to care for themselves and each other when dealing with a dying child.
Attending shared remembrance service and funeral services for the child may help, but they must use techniques such as distancing by taking time off and keeping in good health, focusing on the positive aspects of the care giver role.