Transcript End-of-life care in the pediatric population

END-OF-LIFE CARE IN THE PEDIATRIC
POPULATION
Presented by Kay Hewitt, BSN, RN
Fall 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
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Absent clinical brain function
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Absent brainstem function
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Flaccid tone, no spontaneous movement, no motor response to noxious stimuli
No autonomic responses to noxious stimuli
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
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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:
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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:
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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):
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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:
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Not actually aware of death; they are aware of and react to
changes in normal routines and parental non-verbal
communication.
POTENTIAL BEHAVIORS – INFANT:
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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):
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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:
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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:
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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) :
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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:
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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:
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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) :
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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:
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Have subtle fears about body integrity and anxieties related to
the serious nature of their illness.
POTENTIAL BEHAVIORS – SCHOOL AGE:
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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:
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Decreased concentration for school work.
Psychosomatic complaints – stomach ache or headache.
UNDERSTANDING OF DEATH - ADOLESCENTS (12-18 YRS) :
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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
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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:
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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
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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:
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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:
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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:
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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:
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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
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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:
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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:
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Develop an integrated Plan of Care
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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
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Spiritual Distress R/T child’s impending death
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Anxiety R/T child’s impending death
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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
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
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Remove medical supplies as able
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Cover leaking wounds & place diaper as needed for incontinence
Ask family about preferences for bathing/dressing child
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For Medical Examiner cases, verify what can be removed
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, and
practical 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.
“SOMEWHERE BETWEEN HEAVEN AND EARTH”
I curse the night
I watched you slip away
Wouldn’t have done no good
To beg you to stay
Little did I know
The price was so high
Losing forever
In the blink of an eye
You were here beside me
But now you are gone
I’m just trying hard
To carry on
There’s no rhythm in the rain
There’s no wishes in the stars
There’s no power in this pain
Till somewhere between heaven
earth
I can hold you again
But there’s no rhythm in the rain
There’s no magic in the moon
There’s no power in this pain
Till somewhere between heaven
and earth
I can find you again
Hearts are broken
And dreams are lost
But I made a promise to love
At any cost
If I could one more time
Feel your hand in mine
Hear your voice call my name
And whisper sweet good night
Then there’d be rhythm in the
rain
There’d be magic in the moon
No such thing as love in vain
And somewhere between
heaven and earth
You’d be with me again
And I could see you again
And I will hold you again, my
baby
Somewhere between heaven
and earth…
Somewhere between heaven
and earth…
Somewhere between heaven
and earth…
I will see you again…
http://www.rhapsody.com/cindybullens/somewhere-between-heaven-and-earth
Written 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). Endof-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.