pediatric palliative care › 2014 › dr. carmen johnson... · pediatric palliative care...
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Pediatric Palliative Care
Preconference SHPCA Clinical Day 2014
Saskatoon, SK May 13, 2014
Carmen L. Johnson MD, CCFP, ABFP, AAHPM, AAPM, ABAM, ABRPM (Pain Medicine)
Medical Director Palliative Care Services, Regina Qu’Appelle Health Region
ELNEC
End of Life Nursing Education Consortium
Pediatric Palliative Care
Pediatric Palliative Care
Children are living longer with
complex chronic medical conditions.
Multiple acute and chronic health
crises create significant challenges for
the child and family.
Pediatric Palliative Care
Children in US Population:
– 0 – 18 years
– represent 25% population
– 0‐20 years = 27.6% US population
Pediatric Palliative Care
5 million US children are disabled
Children represent 3% all deaths
1/2 of childhood deaths - first year
1/2 infant deaths (0‐1 yr) 1st month
Pediatric Palliative Care
4 Diagnostic Groups for Pediatric Palliative Care
1) Children with conditions where treatment possible, but
may fail – cancer
2) Conditions where premature death likely - intensive
symptom management can provide good quality of life for
long time (CF, MD, HIV)
Pediatric Palliative Care
4 Diagnostic Groups for Pediatric Palliative Care
3) Progressive conditions in which treatment is exclusively
palliative from diagnosis and may extend over years
(Batten’s, mucopolysaccharidosis, CJD)
Pediatric Palliative Care
4 Diagnostic Groups for Pediatric Palliative Care
4) Condition not progressive, but renders child vulnerable to
serious complications so that life expectancy is actually
very short (hypoxic ischemic encephalopathy, spinal cord
injury)
Pediatric Palliative Care
Challenges in Pediatric Palliative Care
• relative rarity of childhood death
• epidemiology of childhood death
– rare syndromes
– defects
– abnormalities
Pediatric Palliative Care
Challenges in Pediatric Palliative Care
• interpersonal dynamics
– professional
– familial
Pediatric Palliative Care
Unique challenge to health care providers.
Interdisciplinary family-centered care -
integral part of the symptom management
for a chronically ill child.
Pediatric Palliative Care
Overview
Basic principles of pain assessment
infants, children, adolescents
Focus on pain in palliative care
Key Points
Comprehensive, age appropriate pain assessment essential to adequate pain
relief.
Many barriers which impede pain assessment and treatment.
Key Points
Collaboration with interdisciplinary
colleagues - optimum use of drug and non-
drug interventions.
Treatment of pain in palliative care includes
attention to suffering.
Objectives
At the completion of this module, the
participant will be able to:
1. Identify barriers to adequate pain relief
in palliative care.
2. List components of a thorough pain
assessment.
Objectives
At the completion of this module, the
participant will be able to:
3. Describe pharmacological and non-
pharmacological therapies used to relieve
pain.
Pediatric Palliative Care
Symptoms in Dying Children:
89% suffered “a lot” or “ a great deal” from at
least one symptom in their last month of life.
- tx (76%) successful for pain: 27%
- tx (65%) successful for dyspnea: 16%
Suffering pain more likely when physician
not involved in care.
Pediatric Palliative Care
Symptoms in dying children:
89% suffered “a lot” or “ a great deal” from
at least one symptom in last month of life.
- pain
- fatigue
- dyspnea
Palliative Care In Children
Cancer Pain Relief and Palliative Care
in Children
“unlike adults children cannot independently
seek pain relief and are therefore vulnerable,
they need adults to recognize their pain
before they can receive appropriate
treatment”
WHO, Geneva, 1998
Key Nursing Roles
Assessment
Child / family advocacy
Pharmacological treatments
Key Nursing Roles
Non-drug treatments
Child / family teaching
Assessment and Management
Identification as "terminal" may limit care
Assess symptom onset, severity &
effect on quality of life!
Diagnostic testing - Not ‘if’ but ‘why’
Symptoms & Suffering
Determine priorities of the child/family.
What are the child’s/family’s’ goal of care?
Responsibilities are to benefit the child
(beneficence) and to refrain from harm
(non- maleficence).
Symptoms & Suffering
Understand that symptoms create
suffering and distress.
Use an interdisciplinary care approach.
Symptoms & Suffering
View parents as experts in their child’s care.
Explore the role of the extended family,
school, and community.
Symptoms
Hematological
Psychological
Spiritual
Pain
Neurological
Respiratory
GI symptoms
Fatigue
Impact of Pain
‘What is it like to have a child with pain?’
Unendurable
Sense of helplessness
Sense of total commitment
Unprepared/not knowledgeable
Horrible/frightening
No pain in heaven
Dussel et al., 2010
Myths Related Pain Management
Risk of respiratory depression
Addiction
Child that is sleeping/or playing does not have
pain
Presence of pain indicates worsening of
disease or approaching death
(Goldman et al., 2012; Hockenberry & Wilson, 2010; Layman-Goldstein & Sakae, 2010;
Pasero & McCaffery, 2011).
Pain Management Concepts
Children same as adults:
• tolerance
• physical dependence
• addiction
• pseudo‐addiction
Pain Management Concepts
Children same as adults:
• scheduled
• breakthrough
• incidental
• procedural
Facts About Childhood Pain
Opioid addictions are rare.
Repeated exposure to painful procedures leads to increased anxiety and perception of pain.
Studies have shown that children as young as 3 years old can use pain scales.
Carter et al., 2011; Collins et al., 2011;
Goldman et al., 2012; Hockenberry & Wilson, 2010
Children Will Deny Pain If:
Treatment is associated with SQ or IM inj
Previously told to be brave
Don’t understand pain can be treated
Don’t understand questions about pain
-vocabulary issues
Children Will Deny Pain If
Fear medication side effects
Worry about not being discharged to home
if in pain
Believe that the tubes won’t come out until
they stop taking pain medications
Medications taste yucky
Cognitive Stage (Age) Concept of Illness Concept of Pain
Preoperational thought
(2 to 7 years)
Phenomenism:
Perceives external, unrelated, concrete
phenomenon as the cause of illness
(e.g., “being sick because you don’t feel
well")
Contagion:
Perceives cause of illness as proximity
between two events that occurs by
“magic” (e.g., “getting a cold because
you are near someone who has a cold”)
Conceives of pain primarily as physical,
concrete experience
Thinks in terms of magical
disappearance of pain
May view pain as punishment for wrong
doing
Tends to hold someone accountable for
own pain and may strike out at person
Concrete operational
thought
(7 to 10+ years)
Contamination:
Perceives cause as a person, object, or
action external to the child that is
“bad” or “harmful” to the body (e.g.,
“getting a cold because you didn’t
wear a hat”)
Internalization:
Perceives illness as having an external
cause but as being located inside the
body (e.g., “getting a cold by breathing
in air and bacteria”)
Conceives of pain physically (e.g.,
headache, stomachache)
Able to perceive psychologic pain (e.g.,
someone dying)
Fears bodily harm and annihilation (body
destruction and death)
May view pain as punishment for wrong-
doing
Formal operational thought
(13 years and older)
Physiologic:
Perceives cause as malfunctioning or
nonfunctioning organ or process; can
explain illness in sequence of events
Psychophysiologic:
Realizes that psychologic actions and
attitudes affect health and illness
Able to give reason for pain (e.g., fell
and hit nerve)
Perceives several types of psychologic
pain
Has limited life experiences to cope
with pain as adult might cope despite
mature understanding of pain
Fears losing control during painful
experience
Module 6
Table 3: Children’s Developmental Concepts of Illness and Pain .
Source:
Hockenberry, M., Wilson, D. (2010). Wong’s nursing care of infants and children (9th ed.). St. Louis, MO: Mosby. Reprinted with permission.
Barriers to Pain Management
Nurses Pain Management Practices
• 132 Children
• Pain levels average 1.63 (0‐5 scale)
• 50% reported mod to severe pain
• 117 reported pain
Barriers to Pain Management
74% received analgesia
Nurses gave 37.9% of available morphine dose
Nurses gave 54% of available codeine dose
VanHalle VC et al J Pediatric Nurs 2004; (19)1:
40‐50
Developmental Responses to Pain
Young Infants
Generalized body response of rigidity or thrashing
Loud crying
Facial expression of pain (brows lowered and
drawn together, eyes tightly closed, mouth open
and square)
Developmental Responses to Pain
Young Infants
Demonstrates no association between
approaching stimulus and subsequent pain.
Pain can cause decrease in appetite, not able
to be consoled, self-limitation of activity/or
lack of affected extremity.
Developmental Responses to Pain
Older Infants
Localized body response with deliberate
withdrawal of stimulated area.
Loud crying.
Developmental Responses to Pain
Older Infants
Facial expression pain and /or anger (some facial
characteristics as pain but eyes may be open)
Physical resistance, especially pushing the
stimulus away after it is applied.
When in pain, maybe restless or overly active.
Developmental Responses to Pain
Young Children
Loud crying, screaming.
Verbal expressions of “Ow,” “Ouch,” or “It hurts”
Thrashing of arms and legs.
Attempts to push stimulus away before it is applied.
Uncooperative; needs physical restraint.
Developmental Responses to Pain
Young Children
Requests termination of procedure.
Clings to parent, nurse, or significant person.
Requests emotional support, such as hugs or
other forms of physical comfort.
Developmental Responses to Pain
Young Children
Restless and irritable with continuing pain.
Behaviors in anticipation of procedure.
More receptive to distractions or
explanations/medical play.
Developmental Responses to Pain
School-Age Children
All behaviors of young child, esp. during painful
procedure - less in anticipatory period.
Stalling behavior - “Wait a minute” or “I’m not
ready”.
Muscular rigidity - clenched fists, white knuckles,
gritted teeth, contracted limbs, body stiffness,
closed eyes, wrinkled forehead.
Developmental Responses to Pain
School-Age Children
Children listen carefully to what is said around
them.
Have more comprehension & knowledge of
the disease than recognized by adults.
Developmental Responses to Pain
School-Age Children
Explanations of procedures are desired.
Medical play—gives a sense of control for the
child.
Use of child-life specialists are helpful.
Developmental Responses to Pain
Adolescents
Less vocal protest.
Less motor activity.
More verbal expressions, such as “It hurts”
or “You’re hurting me”
Developmental Responses to Pain
Adolescents
Increased muscle tension and body control.
Body image is extremely important
May exhibit overconfidence, stoicism,
embarrassment - hide pain.
Specific Populations
Neurocognitive Impairment
Pain experience
Pain indicators
Effect of uncontrolled pain
Assessment
Knowing child
Recognizing patterns
Specific Populations
Cancer Pain
Disease, treatment, & procedural related
Chronic Non-Malignant Pain
Sickle cell disease, diabetes, rheumatoid
arthritis, HIV, cystic fibrosis, neurological
degenerative diseases
Assessment of Pain
Self-report
Behavioral
Physiologic
Proxy report
Use of scales
Assessment of Pain
1) Ask about pain regularly. Assess pain
systematically.
2) Believe the patient and family in their
reports of pain and what relieves it.
3) Choose pain control options appropriate
for the patient, family, setting.
Assessment
4) Deliver interventions in a timely, logical,
and coordinated fashion.
5) Empower patients and their families.
Enable them to control their course to
the greatest extent possible.
Pain Experience History
CHILD FORM
PARENT FORM
Tell me what pain is.
What word(s) does your child use in regard to pain?
Tell me about the hurt you have had
before
Describe the pain experiences your child has had before.
Do you tell others when you hurt? If yes,
who?
Does your child tell you or others when he/she is hurting?
What do you do for yourself when you are
hurting?
How do you know when your child is in pain?
What do you want others to do for you
when you hurt?
How does your child usually react to pain?
What don’t you want others to do for you
when you hurt?
What do you do for your child when he/she is hurting?
Is there anything special that you want me
to know about you when you hurt? (If yes,
have child describe.)
What works best to decrease or take away your child’s
pain? Is there anything special that you would like me to
know about your child and pain? (If yes, describe.)
Source:
Children’s International Project on Palliative/Hospice Services (ChIPPS). (2000). Section 3: Management
of pain and other symptoms. Compendium of pediatric palliative care (p. 3-3). Arlington, VA: National
Hospice and Palliative Care Organization. Reprinted with permission.
Pain Experience History
Pain Assessment Tools
Pre-verbal / Nonverbal
FLACC
Pain Observation Scale
Modified Objective Pain Score
Non-communicating Children's Pain Checklist
(NCCPC)
FLACC Scale
Category Scoring
0 1 2
Face No particular expression or smile Occasional grimace or frown,
withdrawn, disinterested
Frequent to constant
quivering chin, clenched jaw
Legs Normal position or relaxed Uneasy, restless, tense Kicking, or legs drawn up
Activity Lying quietly, normal position, moves
easily
Squirming, shifting back and forth,
tense
Arched, rigid or jerking
Cry No cry (awake or asleep) Moans or whimpers; occasional
complaint
Crying steadily, screams or
sobs, frequent complaints
Consolability Content, relaxed Reassured by occasional touching,
hugging or being talked to, distractible
Difficult to console or comfort
FLACC Scale
Each of the five categories (F) Face; (L) Legs; (A) Activity; (C) Cry; (C) Consolability is scored from 0-2, which results in a total
score between zero and ten.
Source:
From The FLACC: A behavioral scale for scoring postoperative pain in young children, by S Merkel and others, 1997, Pediatric Nurse 23(3), p. 293-
297. Copyright 1997 by Jannetti Co. University of Michigan Medical Center. Reprinted with permission.
Pain Assessment Tools
Verbal
FACES Pain Scale-Revised (FPS-R)
OUCHER
VAS (Visual Analog Scale)
Verbal Report Scale
Total Pain
Physical Pain
Pain due to disease location
Other symptoms (ie, nausea)
Physical decline & fatigue
Total Pain
Spiritual Pain
Religious/faith, anger at God
Meaning of life & illness
Why me?
Why my child?
Total Pain
Psychological Pain
Grief, depression
Anxiety, anger
Change in appearance
Total Pain
Social
Relationships with family/friends
Role in the family
Financial problems
Social PainPsychological
Pain
Spiritual Pain Physical Pain
Total Pain
Adapted from:
Mehta, A., & Chan, L.S. (2008). Understanding of the concept of “total pain”: a pre-requisite for pain control. Journal of
Hospice and Palliative Nursing, 10(1), 26-32.
Total Pain—An Interactive Model
Pain versus Suffering
Influenced by existential distress, fear of dying and grief
Affects QOL
Pain in Dying Children
90% of children dying of cancer
experience pain or other
symptoms
Nearly 50% had pain relief
Inadequate pain relief hastens
death
Around the Clock Dosing
Opioid Medications – Scheduled
Maintains stable analgesic blood levels
Designed to control baseline pain
Provide PRN doses for breakthrough pain
Stay Ahead of Pain
Individualize Based On:
1) Level of pain
2) Prior experience with opioids
3) And desired activity level
Stay Ahead of Pain
Frequently assess pain
Adjust treatment plan prn
Pain crisis - rapid titration to comfort
Complementary/alternative methods
Patient/Family Education
Address fears/misconceptions
Choose words carefully
-Opioid (not narcotic)
-Medication (not drugs)
Patient/Family Education
Physiology of pain
Pain assessment and use of scale
How pain medications work
Potential side-effects and management
When to call doctor/nurse
Non-Pharmacological Pain Management
Visualization/guided imagery
Deep breathing
Massage
Heat
Positioning
Physical therapy
Meditation
Reiki
Hypnosis
Aromatherapy
Music
Hydrotherapy
Consult
-child life
-social work
-rehab
Distraction
Involve parent and child in strong distractors.
Involve child in play; radio, tape recorder, record
player; singing, rhythmic breathing.
Have child take a deep breath and blow it out
until told to stop (French, Painter, Coury, 1994).
Have child blow bubbles to “blow the hurt away.”
Distraction
Have child concentrate on yelling or saying
“ouch” by focusing on “yelling loud or soft as you
feel it hurt; that way I know what’s happening.”
Have child look through kaleidoscope and ask,
“Do you see the different designs?”
(Vessey, Carlson, McGill, 1994)
Relaxation
Infant or Young Child:
Hold in a comfortable, well-supported position -
vertically against the chest and shoulder.
Rock in a wide, rhythmic arc - rocking chair -
sway back and forth – do not bounce.
Relaxation
Repeat words softly, such as “Mommy’s here.”
With Older Child:
Take a deep breath and “go limp as a rag doll”,
exhale slowly, ask child to yawn (demonstrate if
needed).
Pretend to float like a balloon.
Cutaneous Stimulation
Apply heat or cold before giving injection
Apply ice to opposite of painful area (e.g., if right
knee hurts, place ice on left knee)
Electric vibrator
Cutaneous Stimulation
Massage with hand lotion, powder, or
menthol cream
Includes simple rhythmic rubbing
Use of pressure
Visual Distraction
Describe Pictures
Helps with brief period of pain - few minutes - hour.
Pretend you are in picture. What would you do?
Count the number of items in picture.
Visual Distraction
Describe Pictures
Name each item in picture.
Name the colors.
What is happening in picture?
Make up a story about picture.
.
Route of Administration
Oral is not always least traumatic
toddler/early childhood
Flavor of medications
Crush meds after verification with pharmacy
(Carter et al., 2011; Goldman et al., 2012; Hockenberry & Wilson, 2010; Loizzo et al., 2009; Pasero
& McCaffery, 2011; Walco & Goldschneider, 2008):
Route of Administration
Avoid rectal
No ‘SHOTS’
“If it would hurt you, it would hurt them.”
Role of the Nurse in Pain Management
Identify obstacles
Best practices
Advocacy
Education
Nurses
Responsibility
Summary
Children’s pain is under recognized and treated. Pain must be assessed and managed consistently. Interdisciplinary management. Requires trust and cooperation. Approach the child with the same respect you would an adult.
Golden Rule "If it would hurt you, it hurts them"
References
Hockenberry, M., Wilson, D. (2010). Wong’s nursing care
of infants and children (9th ed.). Copyright 2010 by WB
SAUNDERS CO (B) /ELSEVIER.
Jacox, A., Carr, D. B., Payne, R. et al. (1994).
Management of cancer pain: Clinical practice guideline
No 9. AHCPR publication No. 94-0592. Rockville, MD:
Agency for Health Care Policy and Research,
U.S. Department of Health and Human Services, Public
Health Service.
http://www.jaoa.org/content/107/suppl_7/ES4.full
References
Goldman et al., 2012
Layman-Goldstein & Sakae, 2010
Pasero & McCaffery, 2011
Carter et al., 2011
Collins et al., 2011
Wolfe et al, NEJM, 342,#5, 2000
VanHalle VC et al J Pediatric Nurs 2004; (19)1: 40‐50
References
From The FLACC: A behavioral scale for scoring postoperative pain in young children, by S Merkel and others, 1997, Pediatric Nurse 23(3), p. 293-297. Copyright 1997 by Jannetti Co. University of Michigan Medical Center.
Mehta, A., & Chan, L.S. (2008). Understanding of the concept of “total pain”: a pre-requisite for pain control. Journal of Hospice and Palliative Nursing, 10(1), 26-32.