END-OF-LIFE CARE IN THE PEDIATRIC POPULATION

Presented by Kay Hewitt, BSN, RNFall 2009

Ed. 11/16/09 mp

OBJECTIVES:

After completing this self-study module, students should be able to:

Describe the development of the child’s concept of death. Describe the child’s responses to having a life-threatening

illness or injury by developmental level. Describe the coping mechanisms used by the child and family

in response to stress. Identify the physiologic and psychologic changes that occur in

the dying child. Develop a nursing care plan to provide family-centered care for

the dying child and his or her family.

DEFINITION OF DEATH:

The commonly accepted definition of death in the United States is brain death, or the irreversible cessation of all functions of the brain, including the cerebral cortex and brain stem.

BRAIN DEATH CRITERIA

Absent clinical brain function Flaccid tone, no spontaneous movement, no motor response to noxious

stimuli No autonomic responses to noxious stimuli

Absent brainstem function Pupils dilated, midposition, non-reactive to light No corneal reflexes (wisp test) No oculocephalic reflex (doll’s eyes) or oculovestibular reflex (cold calorics) No gag reflex, rooting, or sucking Apnea when pt removed from ventilator (no breathing observed, paCO2

>70) Two Brain Death exams required

48h apart for children <2 mo 24h apart for children 2mo – 1 yr 6-12 h apart for children >1 yr

CONCEPTS OF LOSS AND DEATH:

Loss: an actual of potential change in status of something valued, so that it is no longer available to be experienced.

Anticipatory loss: is experienced before the actual loss actually transpires.

Complicated grief: is an unhealthy grief that is not resolved, in which the grief is intensified to the level that the individual is so overwhelmed that it interferes with the ability to function.

Bereavement: describes experiencing loss through the death of a loved one, but not the emotional aspect of the loss.

Mourning: is the social ritual and expression of loss, as well as the behavioral and psychological process of adapting to the loss.

STAGES OF GRIEVING:

Denial Anger Bargaining Depression Acceptance

Grief is individualized, some may not experience all stages and others may experience the stages in different sequences.

UNDERSTANDING OF DEATH – INFANT (< 1 YR):

COGNITIVE STAGE - SENSORIMOTOR No concept of death, perceived as separation/abandonment. Affected by parents’ and family’s emotional and physical

state. Reactions occur due to separation from their caregivers.

AWARENESS OF OWN DEATH - INFANT:

Not actually aware of death; they are aware of and react to changes in normal routines and parental non-verbal communication.

POTENTIAL BEHAVIORS – INFANT:

Resists cuddling or more clingy. Protests and despair from disruption in

caretaking. Feeding problems. Cries excessively. Sleeps more than usual.

UNDERSTANDING OF DEATH – TODDLER (1-3 YR):

COGNITIVE STAGE - PREOPERATIONAL No understanding of true concept of death. Aware someone is missing – separation anxiety. Unable to distinguish death from temporary

separation or abandonment.

AWARENESS OF OWN DEATH – TODDLER:

Like infants, toddlers are not actually aware of death; they are aware of and react to changes in normal routines and parental non-verbal communication.

POTENTIAL BEHAVIORS - TODDLER:

Regresses to younger stage of development. Clingy and whining, crying. Refuses to let surviving parent out of sight, fearful. Shows distress by biting, hitting, and tears. Problems eating and sleeping. Alternates between grieving behavior and playing

behavior. May have more physical illnesses.

UNDERSTANDING OF DEATH - PRESCHOOL (3 - 6 YRS) :

COGNITIVE STAGE - PREOPERATIONAL Believes that death is temporary and that the dead

person will return. Death may be seen as punishment. Believes that bad thoughts caused death. “Magical thinking” – believes the dead person can be

brought back to life; or he or she is the cause of death. Has beginning experience with death with pets/plants.

AWARENESS OF OWN DEATH – PRESCHOOL:

Can see their body deteriorate and feel the effects of medications used during disease progression and treatment.

May realize that they are dying.

POTENTIAL BEHAVIORS – PRESCHOOL:

Regression to younger stage of development, problems with bowel and bladder control, and tantrums.

Uses play activities to cope with strong feelings. Asks when deceased will come back. May fear going to sleep, has nightmares, afraid of

dark. Crying spells. Seems morbidly fascinated with death. Asks a lot of questions. Complains of abdominal pain.

UNDERSTANDING OF DEATH - SCHOOL AGE (6-12 YRS) :

COGNITIVE STAGE – CONCRETE OPERATIONS Understands difference between temporary

separation and death; beginning to understand that death if permanent.

May have magical thinking about death is the Grim Reaper, or death is contagious.

May have guilt or assume blame for the death. May not realize that death can occur at any age.

AWARENESS OF OWN DEATH – SCHOOL AGE:

Have subtle fears about body integrity and anxieties related to the serious nature of their illness.

POTENTIAL BEHAVIORS – SCHOOL AGE:

Regressive behavior when under stress. Has angry outbursts and disruptive behaviors. Fears being abandoned and death of others; worries

about surviving family members. May refuse to go to school. Crying, moody, may become more withdrawn and

distant. May try to comfort parents by taking over tasks. May deny sadness by hiding tears and acting more

like adults to seem less different than peers.

MORE POTENTIAL BEHAVIORS – SCHOOL AGE:

Decreased concentration for school work. Psychosomatic complaints – stomach ache or

headache.

UNDERSTANDING OF DEATH - ADOLESCENTS (12-18 YRS) :

COGNITIVE STAGE – FORMAL OPERATIONS Intellectually capable of understanding death. Recognizes all people and self must die. Has a better grasp of association between illness and

death. Sense of invincibility conflicts with fear of death. Able to recognize effect of death on others.

AWARENESS OF OWN DEATH - ADOLESCENTS

Have a mature understanding of death, but the normal developmental milestones of adolescence add to their challenges in facing terminal illness.

They are struggling to establish their own identity and plans for the future.

May be angry because they recognize their loss at a time when the whole world is opening up to them. However, they should not be expected to handle feelings in the same way as adults.

POTENTIAL BEHAVIORS - ADOLESCENTS:

Uses abstract and philosophic reasoning. May seek comfort from friends (girls). Mood swings, withdrawal from friends. Eating and sleeping problems. May feel angry or guilty. Acting-out or risk-taking behavior, delinquency,

suicide attempts, inappropriate sexual behaviors, drug or alcohol use.

PHYSICAL CHANGES DURING DEATH

HR initially increases, then HR & BP decrease. Peripheral circulation decreases diaphoresis, cool,

mottled skin Dyspnea & air hunger may cause panicked appearance Gurgling, moaning, or grunting with respirations; Cheyne-

stokes respirations Agitation, restlessness, confusion, or drowsiness Child may speak of visions not visible to others Hearing is last sense to diminish Decreased renal function & urine output Anorexia common. Sphincters may relax, causing incontinence

Refer to table on p. 725 in textbook

END-OF-LIFE CARE:

End-of-life care (EOL) is a healthcare team focus on providing comfort and emotional support for the child and family.

When delay in the recognition of prognosis occurs, children can experience greater suffering and potentially less integration of palliative care.

LIFE-SUSTAINING TREATMENT:

Treatments which sustain life temporarily, but do not offer a cure

A difficult challenge faced by the team caring for a child with a progressive disease.

Shared decision-making implies open communication between the patient, family and healthcare team, aimed at sharing information and preferences regarding treatment.

It is important to provide the family with all options available to them.

ADVANCED CARE PLANNING:

Parents state that an advance care directive that outlines the medical care plans for the child is helpful in preserving the child’s quality of life and increases the child’s comfort.

Planning should identify: Who are the decision-makers What are expected changes in the child’s functioning & quality of

life What are family/child’s goals (curative vs comfort) Family’s decisions about medical interventions and how

interventions should be modified as child’s status changes Adolescents should participate in decision making

Need to first identify that teen has adequate understanding of implications of decisions

If parents understand that teen has reached decisions based on facts, easier for parent’s to accept teen’s choice to limit treatment

COMMUNICATING WITH THE FAMILY:

Be honest and truthful. Use concrete terms like “dead” or “death,” not “gone to sleep” or “gone away”

Encourage and respond to questions. Do not abandon the patient/family. Check with the family periodically to determine if more

discussion or support would be helpful. Elicit and request the family’s values and goals, and

provide as much help as possible to achieve them. Respect cultural factors that may influence communication. Help patients explore their realistic options. Help them identify persons who will be supportive at this

time. Take the time to listen. Be supportive, but avoid offering unrealistic help.

TO ENHANCE CARE TO THE DYING CHILD:

Develop an integrated Plan of Care Promote collaboration between families, PCP and other practitioners Focus on child’s developmental level Include needs of the family, including siblings

Recognize & understand spiritual & cultural traditions that support family

Refer to Developing Cultural Competence: Diverse Perpectives on Death, p. 717 & Spiritual Traditions in Mourning and After-Death Rites, p. 718

PLAN OF CARE Spiritual Distress R/T child’s impending death

Assess family’s cultural or spiritual beliefs Ask family if they would like to have spiritual advisor notified Facilitate observance of religious or cultural rituals

Anxiety R/T child’s impending death Provide information about signs/symptoms of impending death Encourage parents to invite close family to bedside Provide information about interventions used for comfort Provide information about comfort measures parents can provide

(singing, massage, cool cloth, reading, praying) Ineffective Family Coping R/T child’s death

Remove medical supplies as able For Medical Examiner cases, verify what can be removed

Cover leaking wounds & place diaper as needed for incontinence Ask family about preferences for bathing/dressing child

If parents don’t want to, bathe child & dress in clean gown

Encourage parents to hold child

SUPPORT FOR GRIEVING FAMILIES:

Even after the child dies, emotional, spiritual, andpractical needs for support remain beyond that death. Support groups for various family members.

May include professionals, others who have experienced the loss of a child or a mixture of both.

Continuing support from the Child Life team. Intervention and support may be for a short while or

as long as the family needs it. It is essential to work closely with the family when a

child’s death is imminent, helping to provide the support and services most important to them in the last moments or hours of their child’s life.

I curse the nightI watched you slip awayWouldn’t have done no goodTo beg you to stay

You were here beside meBut now you are goneI’m just trying hardTo carry on

But there’s no rhythm in the rainThere’s no magic in the moonThere’s no power in this painTill somewhere between heaven and earthI can find you again

Hearts are brokenAnd dreams are lostBut I made a promise to loveAt any cost

Little did I knowThe price was so highLosing foreverIn the blink of an eye

There’s no rhythm in the rainThere’s no wishes in the starsThere’s no power in this painTill somewhere between heaven earthI can hold you again

If I could one more timeFeel your hand in mineHear your voice call my nameAnd whisper sweet good night

Then there’d be rhythm in the rainThere’d be magic in the moonNo such thing as love in vainAnd somewhere between heaven and earthYou’d be with me againAnd I could see you againAnd I will hold you again, my babySomewhere between heaven and earth…Somewhere between heaven and earth…Somewhere between heaven and earth…I will see you again…

http://www.rhapsody.com/cindy-bullens/somewhere-between-heaven-and-earthWritten and sung by: Cindy Bullens

REFERENCES:American Academy of Pain Medicine. (2009). Definitions related to the use of opioids for the

treatment of pain. Retrieved October 30, 2009, from http://www.nhpco.org/i4a/pages/index.cfm?pageid=3409.

Ball, J. W., Bindler, R. C., & Cowen, K. J. (2010). Child health nursing: partnering with children and families, 2nd edition. Pearson: New York, NY.

Hellsten, M. B., Hockenberry-Eaton, M., Lamb, D., Chordas, C., Kline, N., & Bottomley, S. (2000). End-of-life care for children. The Texas Cancer Council: Austin, TX.

Institutes of Medicine of the National Academies. (2003). When children die: improving palliative care and end-of-life care for children and their families. The National Academies Press: Washington, DC.

National Hospice and Palliative Care Organization. (n.d.). How to manage your pain. Retrieved October 30, 2009, from http://www.caringinfo.org/LivingWithAnIllness/TheTruthAboutPain/HowToManageYourPain.htm.

National Hospice and Palliative Care Organization. (n.d.). When your child is in pain. Retrieved October 30, 2009, from http://caringinfo.org/CaringForSomeone/pediatrics/WhenYourChildIsInPain.htm.