Pediatric palliative care Flashcards
1
Q
Selective criteria?
A
- Curative treatment is possible but may fail — This includes children with cancer, awaiting solid organ transplantation, or with severe congenital heart disease.
- Intensive long-term treatment maintains quality of life for a chronic potentially progressive condition — This currently includes children with Duchenne muscular dystrophy, cystic fibrosis, and severe immunodeficiencies including human immunodeficiency virus infection
- The focus of care is palliative for progressive conditions without a curative option — This includes infants with trisomy 13 or 18, type II osteogenesis imperfecta, and spinal muscular atrophy type I.
- Nonprogressive irreversible conditions with extreme vulnerability to health complications — Children with severe developmental disabilities, such as those with severe cerebral palsy, hypoxic brain injury, or brain malformations.
2
Q
Unique feature
A
- Parents often express DUAL GOALS for their children that seem contradictory; they continue to “HOPE FOR A MIRACLE” and desire ongoing active therapy toward disease control and simultaneously look to maximizing comfort for their child.
- Children have a developmental understanding of death based upon age.
- Goal is to lessen suffering for BOTH child and parent while allowing curative-directed therapy to extend life; however, establishing goals of care and early discuss allow natural death.
3
Q
WHO definition
A
“The active total care of the child’s body, mind, and spirit, and also involves giving support to the family. It begins when illness (uncurable/ poor-prognosis) is diagnosed, and continues REGARDLESS of whether or not a child receives treatment directed at the disease”
4
Q
Pain assessment tool for child <3y/o, and developmentally disabled patients
A
- CRIES: Assesses Crying, Oxygen requirement, Increased vital signs, facial Expression, Sleep. An observer provides a score of 0-2 for each parameter based on changes from baseline. For example, a grimace, the facial expression most often associated with pain, gains a score of 1 but if associated with a grunt will be scored a 2. The scale is useful for neonatal postoperative pain.
- NIPS: Neonatal/Infants Pain Scale has been used mostly in infants less than 1 yr of age. Facial expression, cry, breathing pattern, arms, legs, and state of arousal are observed for 1 minute intervals before, during, and after a procedure and a numeric score is assigned to each. A score >3 indicates pain. An example is available at: http://www.anes.ucla.edu/pain/assessment_tool-nips.htm.
- FLACC: Face, Legs, Activity, Crying, Consolability scale has been validated from 2 mo to 7 years. FLACC uses 0-10 scoring. An example is available at: http://www.anes.ucla.edu/pain/assessment_tool-flacc.htm.
- CHEOPS: Children’s Hospital of Eastern Ontario Scale. Intended for children 1-7 yrs old. Assesses cry, facial expression, verbalization, torso movement, if child touches affected site, and position of legs. A score >/= 4 signifies pain. An example is available at: http://www.anes.ucla.edu/pain/assessment_tool-cheops.htm.
5
Q
Pain assessment tool in children 3 years of age and older
A
- Wong-Baker Faces scale: 6 cartoon faces showing increasing degrees of distress. Face 0 signifies “no hurt” and face 5 the “worst hurt you can imagine.” The child chooses the face that best describes pain at the time of assessment. An example is available at: http://www1.us.elsevierhealth.com/FACES/.
- Bieri-Modified: 6 cartoon faces starting from a neutral state and progressing to tears/crying. Scored 0-10 by the child.
- Visual analogue scale: Uses a 10 cm line with one end marked as no pain and the opposite end marked as the worst pain. The child is asked to make a mark on that line that is then measured in cm from the no pain end.
6
Q
Opate
A
Tmax:
- PO 1hr
- SC/IM 30min
- IV 6min
1/2 Life at steady-state: ALL SAME 4hrs
PO to IV convertion ratio
- Morphine 3:1
- Hydromorphone: 4:1
- Methadone 2:1
Fentanyl Patch 12mcg/hr ~ 25-30mg/day PO morphine
7
Q
Dosing tips
A
- DELAY elimination: increase risk of toxic metabolite accumulation (M6G)
- scheduled (LONG-acting) + prn
- Re-dose at Tmax if pain persists
- Mild to mod up by 25-50%
- Mod to severe up by 50-100%
- IF pain increasing despite increasing opiate: Total pain
- Opiate rotation and incomplete cross-tolerance just like in adult
- Consider ADJUNCTIVE if opiate fail to control the pain
8
Q
Palliative sedation
A
Propofol or barbitulate drip: may need a lot
9
Q
Symptoms contol
A
Just like in adult
Child NORMALLY breath FAST
if child is NOT DISTRESSed, DO NOT medicate.
LOSS of appetite and thirst is NORMAL for DYING
10
Q
How to approach case
A
Communication goal is to building relationships, LEARN about the child, family, explore parent and child’s understanding of their illness.
- Tell us about your child before he/she became ill.
- What makes your child happy? Sad?
- What is your understanding of your child’s illness/condition?
- What have the past few weeks or months been like? What are you anticipating?
- What are your hopes? What are your worries?
- In light of your understanding of your child’s illness, what is most important to you and your family?
REMEMBER you there to SUPPORT.
11
Q
Decision making
A
- Parents are the legal decision makers
- Children should be INVOLVED in their treatment decisions at a developmentally appropriate level; they can voice their preferences about treatment and care decisions
12
Q
Children 2 to 5 years of age
A
- Magical thinking, Death is reversible
- Death as PUNISHMENT
- Simple, CONCRETE information with explanations
- Comfort, reassurance, and the CONSTANT PRESENCE of FAMILY
- INVOLVING parents in care and explanations
- Answering questions calmly and with examples, using play, puppets and dolls, expressive therapies, and storytelling for teaching and expression of emotion
- “Checking in” about the child’s understanding
13
Q
Children 6 to 9 years of age
A
- UNDERSTAND death is IRREVERSIBLE, unpredictable
- May FEEL RESPONSIBLE for the illness; REASSURE that it is NOT PUNISHMENT/ FAULT
- CONCREATE thinking and answers.
- Preoccupied with DETAILS and ask the SAME QUESTIONs repeatedly
- Comfort, reassurance, and the CONSTANT PRESENCE of FAMILY
- personal identity, FEAR: abandonment, change body image, differ from others
- ALLOW them to speak, offer options
- Benefit from reading, playing, drawing, art, and music as appropriate modalities of intervention
14
Q
Children 10 to 12 years of age
A
- personal identity: FEAR/AWARE of being different
- May exhibit stoic and brave responses in an attempt to protect their parents and caregivers
- INDEPENDENT: May benefit from meeting with other children or caregivers away from their parents.
- Benefit from a safe environment to explore fears, hopes, and expectations
- May benefit from reading, playing, drawing, art, and music interventions, along with peer-based support
15
Q
Communicating with young adult 13-17
A
- Searching for meaning, purpose, hope, and value of life, and an EVOLVING relationship.
- Display a wide range of response to facing critical and life-threatening illness
- Feel caught between finding independence and feeling the pull of dependence. LET them talk
- Feel ISOLATE, “different”: PEERS SUPPORT groups
- Benefit from activity-based groups not focused on illness
- Benefit from creative outlets, including art, dance, music, videography, blogging, and writing
