Pediatric Palliative Care Flashcards
(99 cards)
1
Q
Should children be told about death and dying?
A
- Many adults erroneously believe children cannot comprehend death or dying or that it would be too overwhelming (based on the parents’ own level of distress)
- However, children often possess and sometimes misunderstand information that has not been overtly shared with them
- Children benefit from honest communiation and from being included in the family’s expression of sadness and grief
- Research shows that parents do not regret discussing death with their child, but may regret not doing so
2
Q
Factors in how a child can understand death and illness
A
- Age and developmental capacity are linked to concepts of death, as well as other factors including culture, expression of grief by adults around them, religious and spiritual beliefs.
- May be relatively advanced or gressed
- Previous and ongoing exposure to illness or death affects their capacity for understanding
3
Q
Concepts of death in infancy (0-2 years of age):
Key concepts, example, practical implications
A
Key concepts:
- Experience the world through sensory information
- Working on attachment, basic self-regulation, and trust in their environment and caregivers
Death:
- Aware of tension, the unfamiliar, and separation
- No understanding of finality of death or time, but will feel the absence of a familiar caregiver, change in routine, and emotional distress of adults around them
Practical implications:
Comforted by sensory input (rocking, sucking, touch, familiar people, transitional objects)
Strategies:
- Familiarity and structure are essential
- Familiar caregivers in the months/weeks leading up to death
- Provide routine in as consistent and predictable way as possible (consider use of a schedule)
- Use familiar objects - bottles and cups, stuffed animals and toys, blankets, portable crib, etc.
4
Q
Concepts of death in early verbal childhood (3-6 years of age):
Key concepts, example, practical implications
A
Key concepts:
- See death as reversible
- Death is not personalised
- Magical thinking and associative logic
- Egocentrism
Example:
- May play with stuffed animal, lying it down ‘dead’ and standing it up ‘alive’
- May not believe death can happen to them
- May equate death to sleep or believe it is reversible and try to offer solutions to make it ‘all better’
- May believe that they can cause death with their thoughts (e.g. wishing someone would go away) or actions (e.g. misbehaviour)
- May attribute others reactions and grief to their own behaviour and will need frequent reminders that they are not the cause of everyone’s feelings
Practical implications:
- Provide concrete information about the state of being dead (e.g. a dead person no longer breathes or eats)
- Address the concept of feeling responsible and guilty because of their thoughts
- Provide regular conversations about how nothing a child says or does can make someone die
- Ask how they think their loved one became sick and dispel misconceptions repeatedly
- May show some signs of regression under stress (e.g. potty training)
- Changes in routine may escalate stress or behavioural difficulties
5
Q
Concepts of death in middle childhood (7-12 years of age):
Key concepts, example, practical implications
A
Key concepts:
- Aware that death is final
- Death is personalized
- Earlier ages - understand causality by external causes, and at later ages by internal causes
- May struggle with abstract/spiritual issues
- May struggle with unfairness of loss
- May ask difficult or offensive factual questions
Example:
- Aware that death can happen to them
- Believe that death is caused by events such as an accident, may view death as a monster
- Understand that death can also be caused by illness
Practical:
- May request graphic details about death, including burial and decomposition
- May benefit from learning the specifics about an illness
- Vulnerable to worries about their own health or health of their surviving family members and may require reassurance
- Important to notify teachers at school and for children to know who to approach if they are having a difficult day - but helpful for children to still have a certain level of responsibility and routine while grieving
6
Q
Concepts of death in adolescence (>12 years of age):
Key concepts, example, practical implications
A
Key concepts:
- Appreciate the universality of death, but may feel distanced from it
- More adult capacity for abstract thinking, understand death is final, irreversible, universal, and may think actively about existential and spiritual issues
- May vacillate between abstract ideas about death and then being preoccupied with very specific, self-centered ways it impacts their life
- More anticipation and worry about the future
Example:
- May engage in risky behaviour, with the view that ‘it can’t happen to me’ or ‘everyone dies anyway’
- May struggle with existential issues
- May focus on person effects of loss
Practical Implications:
- Ensure access to supportive peers and that their peers are supported
- Adolescents who themselves are facing premature death may have a need to talk about plans that will not be realised (e.g school, relationships, marriage)
- Understand that self-involvement is developmentally normal, not a character flaw
- Understand the risk of more independent activity than they are developmentally ready for, or risk of risky behaviours
- Need accurate information to make decisions about moving away for education or work
7
Q
Elements of sharing information about serious illness and death with a child
A
- Explore how the family communicates (observation, other members of the interprofessional team, and ask how the family has shared difficult news with the child in the past)
EG: Does ___ like a little or a lot of information? Does he ask a lot of questions? What does he know about what is happening? - Find out how the family would wish the information be shared (e.g. by parents alone, with someone else there to support) and ensure support is OFFERED
- Assist the family in talking with their children, but DO NOT do it for them (family will have to continue the dialogue after you are no longer present)
- Use language that is easy to understand, honest, and gentle
EG: I wish that things were different/I am sad we have not been able to make it better. - Let the child guide how much information to share and what they can take in at one time.
- Explore the beliefs of the child and family, with self-awareness of how your own beliefs may differ and do not impose these
- Reflect on some of the emotions the child may have, including sadness, confusion, and anger
- Support the child/family in what is important to them
- Clarify the child’s understanding without making it feel like a test
EG: We have talked a lot. Can you tell me about the part you remember best? If a friend asked you what is happening, what would you tell them?
8
Q
How to respond to a question of how to talk to a child about serious illness/death without crying
A
Children may be comforted when the people they care about and are role models are also upset by illness or death, and crying is completely acceptable.
The expression of grief should not be so intense that the child feels that they ned to comfort and support the parent/health professional
Provide concrete and practical approaches to support those who are grieving. Developmentally appropriate toys and play activities can serve as a bridge to them in a time of emotional turmoil
Talking about some of the child’s favourite videos or cartoon characters can be a gentle introduction and help those interacting with him feel more at ease
Children may draw or use stuffed toys as a way to express their emotions and questions about what is happening around them
9
Q
What is helpful in supporting a child through serious illness or death?
A
- Help families find language in line with spiritual beliefs, but that is also comforting and developmentally appropriate
- Know that misinformation can lead to confusion and fear (e.g. cause fear of going to sleep, angered by religious symbols, or frightened every time a family member travels). Give honest information.
- Families should answer the child’s questions about the end of life process thoughtfully and honestly (better to say ‘ I don’t know’ or “I know someone we can ask” than to make something up)
- Consider resources including videos, websites, and books
- Grief and play may be combined. Families should understand this as part of normal childhood development, rather than something that reflects the profound impact or a measure of grief.
10
Q
How best to support the young sibling of a child who is dying
A
- Ensure there is someone the child trusts available when the sibling is dying, as parents may struggle
- Share information in a way that is paced according to his needs. Share some information, then wait to see what questions are generated rather than try to anticipate what questions may be in advance.
- Ensure the siblings can interact (e.g. a step stool so that the sibling can interact with the child in a hospital crib)
- Arrange for developmentally appropriate play materials and a support person to be available for the sibling, so that he is a part of the family’s activities while being able to move in and out of sadness, play, and grief.
11
Q
How to respond to a child’s question: “Is he sleeping?”
A
” He might look like he’s sleeping, but being dead is very different than sleeping”
12
Q
How to respond to a child’s question: “What is dead?”
A
“Dead means the person’s heart isn’t beating any more, that they don’t need to eat any more, that they aren’t hungry or thirsty any more, that they don’t breathe any more, etc.”
13
Q
How to respond to a child’s question: “What happened to my sister?”
A
Use honest language and NOT cliches (e.g. gone away, gone to sleep). Use the word death, dead, and dying.
14
Q
How to respond to a child’s question: “Why did she die?”
A
“Your sister died because _____ and it just couldn’t be fixed”
15
Q
How to support a child’s involvement at the time of death?
A
- Children benefit from being involved in the care of the dying person (e.g. bring soap for a bath, drawing a picture, singing a song)
- Helpful to have a support person available to them in addition to a friend or family member (e.g. child life specialist, volunteer, medical professional). Allows the individual to give full attention to the child without being overwhelmed by their own grief and also provides the child with a ‘break’ from the focus on dying
- Prepare the child for what the room will look like and what the dying or deceased person will look like (e.g. “machines around the bed . . .”)
- Information about what the person will look like at the time of or after death “Her skin is not pinkish like ours, it will be a bit bluish. She might feel a bit cool if you touch her.”
- Let them know that they can talk to their family member and touch and kiss them if they want
- Consider ways for the child to say “I love you” “I remember” and “goodbye”
16
Q
How to deal with a child’s imagination around death
A
- Imagination can be very vivid an can create images and fears that are worse than reality
- Best to be honest even when faced by a distressing reality
- Children without adequate information may create a backstory more frightening than the reality
17
Q
How to deal with guilt around death
A
- Children may have ‘magical thinking’ (e.g. wanting to leave food or toys for the family member, thinking they were responsible for death because they wished they’d go away)
- Guilt may be a particular issue if the child acted as a bone marrow or organ donor
Tell children, even if unprompted, that it is not their fault and they are not responsible
Tell children that the condition is not contagious and “it is not something you, your mom or dad could catch.”
18
Q
Should children attend a funeral?
A
- Children generally do better when they participate in the rituals that others do
- Allows them to see that others are sad and it is okay to express sadness, and that even if you are sad, you can still go to work, continue with life, etc.
- Allows children to express emotion and feel safe in doing so
- Older children may want to be involvedin the planning or service
Strategy:
- Prepare child for what they will see at the funeral in detail (there will be a lot of people sad and crying, singing and talk by a minister, etc.)
- Explain whether or not there will be a coffin and whether or not they will be able to see the body
- Children may want to place a picture, note, or special object in or on top of the coffin
- Provide information in a simple manner and ensure questions are answered
- Ask someone whom the child trusts and likes to accompany them, just for them, in case they need comforting, or need to leave and come back
- Allow the child to choose whether they want to attend or not. Additional or alternative ways to say goodbye should be available
Note that internment may be troubling for younger children who do not yet fully understand death - may consider having children not attend the burial itself, but visit the gravesite at another time.
19
Q
How can survivors be supported as they grow older?
A
- Understanding of death will evolve as they grow older
- Reflection on what life could have been like may become a focus as the child matures and reaches some of his own important lifetime milestones
- May require different details to better match his continuing and enhanced capacity for understanding
- May have more complex questions about death that should be raised proactively
- May benefit from being told stories about the relationship with the loved one and being shown pictures of them together that reinforce their mutual importance
20
Q
How to talk with pediatric patients in situations where one must “hope for the best but prepare for the worst” in the context of a chronic illness (e.g. CF)
A
- Many patients with chronic illness will have thought about such issues or talked about them
- Bringing up palliative care treatment options early can reduce the fear associated with such situations, allow time for thought, and plant seeds for later discussions and decisions without eroding hope
Earlier recognition of the probability of a child’s death has been associated with early integrated PC and improved QoL
- Discussions provide opportunities to reassure the child that they will not be abandoned and will be remembered
21
Q
Pain and symptom assessment in children
A
- Intensity of a pain or symptom best rated by self-report
- Can use self-report, behavioural, and physiological
Physiological:
- Limited, HR and RR only loosely correlated to pain and do not distinguish between pain and anxiety
Scales:
- Scale of 0-10 can be used in children with the developmental capacity of 7-8 year olds, and Faces Pain Scale Revised for younger patients, 3-4 years of age)
Behavioural:
- If scales cannot be used, use behavioural observations, ideally by someone who knows the child well
- Usually best for children under 3 and in cases of impaired cognitive or verbal ability
- Better established for ACUTE rather than chronic pain
22
Q
Point at which 0-10 scale can be used for kids for assessment of pain or symptoms
A
7-8 year old developmental capacity
23
Q
Point at which modified pain rating scales with faces of children in varying degrees of distress can be used
A
3-4 years of age
e.g. Faces Pain Scale - Revised
Do not use words describing affect (e.g. happy or sad) but use words the child uses for pain (e.g. ‘owie’ ‘hurt’)
24
Q
Unique aspects of pain and symptom management for children: Communication
A
- Do not ignore, underestimate, or under treat pain in children (common tendency)
Communication
- Tailor pain measurements to developmental age
- Medical condition can affect pain assessment - e.g. CP where a child may grimace or have increased tone unrelated to pain
- High prevalence of cognitive impairment
- Less likely to express specifics (e.g. pain, nausea, itching, bowel/bladder dysfunction)
- Children may lack understanding of cause-effect relationship (e.g. less likely to continue with the analgesic if there is relief)
- Consent may be an issue - assent (even if consent is not appropriate) are appropriate requirements for treatment. Caregivers and HCPs may underestimate ability of children to make informed decisions
25
How opioids are dosed in children
- Use mg/kg dosing for children < 50kg
- For children > 50kg, use adult dosing
- For non-ventilated infants, start at one third of the usual mg/kg dose and titrate up
26
Risk of opioid neurotoxicity in infants - why and how to manage
Increased risk because of:
- increased surface area
- Fat to muscle ratio
- Decreased glycocproteins
- Decreased renal and hepatic clearance capacities
How to manage:
- Start with 1/3 of normal mg/kg dosing in non-ventilated infants and titrate to effect
27
Education for families in providing opioids
- Ensure misperceptions are addressed that might limit child's access to pain relief
Reassure that:
- Pain medications will not generally impair an child's ability to interact, play, and be themselves, but uncontrolled pain will
- Children are not at increased risk of adverse effects (e.g. respiratory depression)
- Children are not at increased risk for addiction
28
Compared to adults, how common is pain in children with cancer
- As in adults, pain is common in children with advanced cancer
- Procedures and interventions make the greatest contribution to cancer pain in children (rather than disease-related pain typically seen in adults)
29
Goals for pain relief in children at end of life
- Goal of pain relief is attainable in children
- Pain relief with preservation and enhancement of the child's quality of life is a reasonable expectation
- There is no maximum opioid dose for children when they have moderate to severe pain
- Even at very high doses, children general have preserved cognitive and hemodynamic function and sedation is required infrequently
30
Appropriateness of PCA for children
PCA can be used by children at a developmental age of 6 years and older
Even younger children may benefit if they understand the cause and effect concept of relieving their intermittent pain by pushing th ebutton
31
Principles of analgesic therapy in children
Always ensure a DETAILED assessment has occurred
1. Aim for pain relief with lowest effective dose and start with IR to determine opioid requirements, then go to SR
2. Anticipate, prevent, and actively treat side effects
3. Use around the clock dosing with breakthrough at 10% TDD and at frequency according to peak onset of action (q30mins to q60mins)
4. Use non-noxious routes for analgesic administration (oral admin if possible and ensure the preparation is acceptable to the child in terms of palatability, dosing, etc.)
- Do not give IM injections and avoid rectal administration
- Do not use TD fentanyl in an opioid naive child with unstable pain
- If the child already has a central line, use this rather than subcut access
- If using subcut access, use a small gauge needle (25-27G)
- Use topical anesthetics before inserting a subcut or port a cath needle
5. Always start a bowel regimen with opioids
6. Rotate opioids if there are side effects
32
Analgesic choice in children
Acetaminophen for mild pain (do not use NSAIDs in the case of thrombocytopenia)
Low dose opioids for mild to moderate (do not use tramadol or codeine based upon lack of evidence for safety/efficacy in children). Morphine is generally preferred. For neonates, consider fentanyl.
No maximum dose for opioids used in moderate to severe pain (morphine, hydromorph)
Do not use meperidine for pain lasting more than a couple days as toxic metabolites will accumulate
33
Adjuvant analgesics for children
- Gabapentin
- Corticosteroids (not recommended due to low quality evidence)
- Amitriptyline
- Low dose ketamine
- Use caution with neuroleptics (risk of dystonia)
Note - no evidence based recommendations for TCAs, SSRIs, anticonvulsants or ketamine based on WHO guidelines, but there are anecdotal reports of evidence and small case studies/series.
- Consider physical approaches such as massage and TENS
- Cognitive approaches such as distraction and guided imagery may help
34
How to measure the intensity of dyspnea in children
Self report with tool appropriate to child's developmental age
- 'A little or a lot breathless?"
- Visual analogue scale (Dalhousie Dyspnea scale) for children 8 or older
- "What can you do or not do because of your breathing?"
If unable to use self report, use observation
35
Investigation of dyspnea for children
Depending on circumstance:
- CBC
- CXR
- NP swab
etc.
36
How to monitor O2 sats or blood gas?
- Monitoring should be based on goals of care
- During end of life care, monitoring may simply add to anxiety when assisted ventilation is not indicated
- For some patients, monitoring is important and considered part of care and to not provide would be consistent with abandoment
- ABG monitoring can be painful, but pulse ox is not
37
Supplemental O2 at end of life for children
- Should be administered according to comfort of the child and not dictated by O2 sat
- Consider none at all, facemask, nasal prongs, or blow by (supp O2 directed towards child's face)
Dictated by child's preference or apparent comfort if verbal response is not possible
38
Non-pharm measures for dyspnea in children
- Fan
- Cold face cloth
- Favourite scent in the room
- Positioning (may require assistance due to developmental or disease related limitations)
- In the case of a large pleural effusion, always place the child 'bad side down' unless the child prefers otherwise
39
Pharmacologic measures to decrease dyspnea in children
- Opioids
- Consider a benzo in the case of anxiety
- Sedation may be required for symptom relief at times
Education for family/friends that palliation may decrease the experience of dyspnea for the patient, but may not change the pattern of the child's breathing (e.g. nasal flaring, tracheal tug, noisy inspiration/expiration)
40
Use of medications to treat increased secretions in children
- When child is unresponsive, noisy breathing associated with increased secretions can be distressing to the family
- Acknowledge that this sounds distressing to the family, but reassure that this is in no way bothersome to their child
- Anticholinergics (e.g. glyco or scopolamine) can be helpful to reduce the secretions and thus sounds
41
Unique aspects of pain management in children: Presentation
- Do not ignore, underestimate, or under treat pain in children (common tendency)
Presentation
- Children in pain may present with non-specific symptoms (irritable, withdrawn, less communicative)
- May be dependent upon the response of an adult to alleviate their pain
42
Unique aspects of pain management in children: Management
Management
- IV route more commonly used in kids than subcut route as there is often an established central or peripheral line
- Opioid rotation used more commonly because children in pain are often on many concurrent medications, and because side effects may be managed by changing the opioid rather than adding yet another medication
- Many medications are not licensed for use in the pediatric population and are used 'off label' without known weight-based dosing, especially when prescribing longer term
43
Evidence: Newborns do not have a mature nervous system to experience pain
By 26 weeks, a fetus is capable of experiencing pain as pain pathways are well-developed
Pain response in young infants have been well documented.
44
Evidence: Children do not feel as much pain as adults
Children feel pain as much as adults, and perhaps even more
45
Evidence: Children will get used to pain. If they experience it as a young child, they will have no lasting memory of it and it will have no lasting effect
Continuing pain causes long term changes in the nervous system.
Early pain experience may produce permanent reorganization of the developing nervous system and may impact negatively on future pain experience
46
Evidence: Children cannot explain their pain reliably
Children are capable at a very young age (even 20 months) of saying where it hurts, how much, and what makes the hurt feel better.
Pain intensity can be reported at age 3
Children as young as 4 can indicate pain on a body chart
47
Evidence: If a child can be distracted, the child is not in pain
Children use distraction and play as a coping mechanism for pain
48
Evidence: If a child says he is in pain but does not appear in pain, the child does not need relief
The child is the authority on whether she is in pain.
Adults and HCPs often underrate children's pain, worry that children exaggerate pain which leads them to discount it, and diminish the seriousness of pain and suffering as it may be difficult to treat.
49
Evidence: A sleeping child is a comfortable child
Sleep may be due to exhaustion from pain. Disturbed sleep may occur.
50
Evidence: Opioids are dangerous for children and may lead to addiction
Opioids are invaluable for pain and children are no more at risk of addiction than adults. Addiction is not experienced in patients with true pain on therapeutic doses
51
Factors affecting experience of pain in children
Cognitive
- Understanding
- Control (offer children reasonable options and choices - e.g. tablets or liquid, massage or heat pack)
- Expectations
- Relevance
- Pain control strategies
Behavioural
- Overt actions
- Parental/staff response (calm and consistent approach and encouragement in using effective coping can help to lessen pain)
- Physical restraint
- Physical activities (encouraging routine and normal activities can help to manage pain)
- Social activities (can help to lessen anxiety and pain)
Emotional (direct impact on pain complaint, persistence of pain, further development of pain - distress usually leads to more intense experience of pain)
- Anxiety
- Fear
- Frustration
- Anger
- Depression
52
Components of pediatric pain history
- What words do the family and child use for pain?
- Verbal/behavioural cues of pain?
- What do parents/caregivers do when child has pain?
- What works best to relieve the pain?
- Disturbing the child's sleep/emotional state?
- Restriction of physical activities?
- Restriction of social activities?
- Location, OPQRST of pain
53
Presentation of pain in infants
- Facial expression and pitch of cry are key indicators
- No single behaviour indicates pain
- May cry or 'guard' to protect a painful area
- By 6 months, babies will anticipate painful situations and be fearful if they previously experienced pain in the same context
54
Presentation of pain in toddlers
- Rapid development of pain language between 12 and 30 months
- Can use descriptive language (e.g. like sore or booboo) and indicate the part of their body that hurts
- May demonstrate anger, upset, sadness if they experience pain
55
Presentation of pain in pre school children
- Children age 2-5 years can understand vocabulary for both positive and negative emotional experiences
- Start to distinguish between cause and effect (e.g. banging arm made it hurt)
- Magical thinking and may think the pain is punishment for unrelated behaviours or events
- Chronic pain may result in withdrawal and child may stop thinking of it as abnormal and seem almost 'too well behaved"
56
Presentation of pain in school aged children
- 6 years, can define pain intensity
- 7-10 years, can explain why it hurts (e.g. I broke my leg)
- Explanation of facts can allay fears and misconceptions and children can more readily understand cause and effect
- Younger children may still perceive pain as punishment
- Chronic pain and internalization can result in withdrawal and 'depression'
57
Presentation of pain in Adolescents
- Insight into psychological and physical aspects of pain
- Able to reflect upon pain experience
- Pain can be seen as an injustice and an aggressor and may show signs of regression in their coping
- Tendency to 'play down' pain in front of peers or parents
- Attachment style and cognitive-affect factors might increase vulnerability for problematic pain outcomes
- Worry is prevalent, be aware of risk of catastrophizing and emphasise ability to manage and control pain
58
Presentation of pain in kids with severe cognitive impairment
- Usual behavioural, verbal cues may not be present
| - Increased incidence of pain, but reliant on parents/carers to recognise
59
Presentation of pain in the malnourished child
- May be developmentally delayed through either under stimulation or as a complication of an associated chronic condition
- May be lack of facial expression/verbalization/limited physical response
- Whimpers or faint moans may be indicators
60
Behavioural indicators of acute pain in children
- Facial expression
- Body movements and posture
- Inability to be consoled
- Crying
- Groaning
61
Behavioural indicators of chronic pain in children
- Abnormal posture
- Fear of being moved
- Lack of facial expression
- Lack of interest in surroundings
- Undue quietness
- Increased irritability
- Low mood
- Sleep disruption
- Anger
- Changes in appetite
- Poor school performance
62
Assessment of chronic pain in children
- No validated scales in children for chronic pain
- overt signs tend to dissipate in chronic pain
- More likely to result in more complex changes to behaviour/routine/emotions
63
Social Communication Model of pain in children
```
Experience (patient meaning)
->
Expression of pain
->
Adult's assessment of pain
->
Adult's action/judgment of pain
```
action/judgment then leads to intervention, which feeds back into experience and starts the chain again.
64
WHO approach to pain in children
1. Detailed assessment
2. Dose analgesia at regular intervals when the pain is constant (by the clock)
3. Break through available
4. Simplest route of administration (by appropriate route)
5. Tailor treatment to the child (by the child)
```
Ax
By the clock
Breakthrough
By simplest appropriate route
By the child
```
65
Two step approach to pain in children
Categorises pain and approach to mild vs mod/severe
- Tramadol and codeine excluded from the guidelines based upon safety and efficacy of these meds in children
- Codeine is inconsistently metabolised and has a low analgesic effects with significant side effects
66
Approach to mild pain in children
Acetaminophen
- Effective relief from mild pain
- Safe in neonates, children under the age of 3
- Available in tablets, syrup, and parenteral formulations (just not in canada)
- Base upon body weight
- Hepatotoxicity is rare but can occur - watch for hepatic or renal disease, enzyme induction with other drugs including rifampicin, carbamazapine, phenobarbitone, and malnutrition
Ibuprofen
- Safe in children over 6 months of age
- Take care in renal disease or dehyrated children
- Risk of GI, renal, cardiovascular side effect is low
- Use cautiously in patients with cancer due to increased risk of platelet dysfunction and bleeding
- Avoid in thrombocytopenia
67
Approach to moderate/severe pain in children
Opioids
- Ensure sufficient time is spent on providing education to family and child around addiction risk (difference between tolerance/physical dependence and addiction)
- Titrate gradually until pain relief is achieved
Principles:
- By the clock for constant and severe pain
- Note that morphine half life is shorter in children, but generally q4H dosing works well for IR (note that some may require q8H dosing for SR formulations)
- For infants under 12months or those with impaired renal function, require q8H dosing for IR formulations due to decreased renal clearance
68
Dosing of opioids in infants
q8H due to reduced renal clearance of morphine
69
Route of administration of opioids in children
- Oral route preferred as it is least invasive
- Consider palatability and availability of oral solutions and size of tablets to ensure compliance
- Review these issues regularly to avoid conflict between child and parent over medications
Consider a parenteral route when:
- Poor absorption (vomiting, disordered GI motility)
- Inability to comply (unconscious, severe nausea, poor swallow, risk of aspiration, medication refusal)
- Pain crisis requiring rapid titration of opioids
Consider buccal route:
- Midazolam (available in buccal route)
- Methadone
- Diamorphine
- Intranasal fentanyl
70
Adapting treatment to the child (by the child) in management of pain
Initiation
- Weight based dosing for kids < 50kg for initial dose
- Morphine is first line, HM second
Titration
- Increase dose accordingly, maximum by 50% of the previous total opioid dose in non-naive patients
Maintenance
- Established once the lowest effetive dose is found
- Long acting opioid if possible, particulalry long acting morphine
- Minimal TDD of morphine 30-40mg PO is required before starting the lowest dose of fentanyl patch (12mcg/hr)
71
Opioid rotation in children
- Consider when children have dose limiting side effects
| - Ensure decrease of 25-30% equianalgesic dose to reduce toxicity and counter possibility of cross-tolerance
72
Opioid side effects in children - most common, management
Side effects are more likely to occur with the sudden withdrawal of a painful stimulus (e.g. rads to bony mets) - may be helpful to switch to short acting or an infusion in this context
Drowsiness
- Most common in opioid naive patients
- Usually subsides after a few days (warn carers in advance)
- If it persists and liver/renal pathology is excluded, consider rotation
- Methylphenidate has been tried, but risk of AEs (e.g. delirium, psychosis)
Respiratory depression
- Rare when opioids are dosed properly
- May occur with sudden withdrawal of painful stimulus (switch to short acting in advance for more rapid titration!)
- May occur with renal or hepatic failure and accumulation of opioid metabolites
- Treat with small, frequent doses of naloxone and may require an infusion until the adverse effect resolves. Watch for reversal of analgesia as it could precipitate withdrawal or extreme pain. Consider assisted ventilation.
Nausea
- Rare in children compared to adults
Constipation
- Common in children
- Start bowel protocol with all patients
Pruritis
- Not uncommon in children, often happens around the nose and face
Myoclonus
- May occur due to long term use OR toxicity
- Rotation
- Or Rx with benzo or muscle relaxant
Urinary sx (retention)
- Can occur , especially after rapid dose escalation or spinal or epidural opioids
- External bladder massage/pressure, heat packs, voiding in a warm both, or intermittent catheterization/cholinergic meds could be used
- Alternatively, consider rotation
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Treating muscle spasm in children
- Sporadic, episodic
- May be seen in neuromuscular conditions and neurological impairments
Triggers:
- constipation
- seizures
- GERD
- Discomfort for ortho supports
Treatments:
- Antispasmodics (dantrolene, baclofen - may be given intrathecally)
- Opioids (but trial withdrawal on a regular basis as spasm may dissipate with time)
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Treating bone pain in children
Causes:
- Chronic neurologic conditions e.g. CP, neuromuscular conditions (secondary distortion of the normal skeletal structure), may be compounded by immobility, feeding difficlties, use of anticonvulsants, lack of exposure to natural light (e.g. Vit D deficiency)
- Inherited metabolic disorders with involvement of the bone from systemic disease, or primary defects of bony structure
- Secondary effects of treatment (e.g. prolonged steroid use in cancer)
- Osteopenia (altered bone metabolism due to malnutrition, cancer/infections - note higher rates in HIV/AIDS)
- Cancer induced bone pain
Treatment
- Little evidence for bisphosphonates in children, though some experience in children with congenital/acquired osteopenia
- Rads for cancer-induced bone pain
- Opioids
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Management of neuropathic pain in children
Presentation
- Unusual descriptors used by child (fizzing, tickling, pricking, itching, numbness, etc.)
Ensure a comprehensive exam is done to try to define the distribution, though difficult depending on the age
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Cerebral irritability in children - definition, presentation
Clinical presentation of persistent, unremitting agitation and distress
Presentation
- Typically occurs in non-verbal children with severe neuro impairment
- May be seen in infants with acute illness, children with progresive neuro disease (e.g. AIDS encephalopathy)
- Agitation and distress are key, may be difficult to differentiate from agitated delirium at end of life
- When chronic, may be temporally related to GI symptoms
In young infants or non-verbal children:
- Unrelenting, high pitched scream
- Increased tone or seizures
- Sleep wake cycle disruption
- Autonomic dysfunction (sweating, paradoxical bradycardia)
- Increase in secretions
- Vomiting, retching, feed intolerance
Management
- May require hospital admission to work up and exclude reversible cause
- Treat any confounding factors
- Assume that pain is a feature until proven otherwise
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Central pain in children: Definition/presentation
- Damage to any part of CNS
- E.g. Neurodegenerative conditions, hypoxic or traumatic brain injury
Presentation
- Persistent screaming and distress
- Visceral hyperalgesia
- Cerebral irritability
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Visceral hyperalgesia in children: Definition/presentation
- Possible cause of cerebral irritability
Definition
- Altered response to visceral stimulation resulting in activation of pain sensation
- often associated with gut motor abnormality, exaggerated intraluminal pressures and pain sensations
- May be caused by activation of gut wall nocicepters with subsequent sensitization
- May be instigated by repeated painful GI experiences in infancy (e.g. prolonged neonatal care, GERD, constipation, gastrostomy feeding, etc.)
Presentation:
- Feeding intolerance with neuro irritability
- Arching, crying, disrupted sleep
Treatment - not well defined or studied, poor evidence for all
- Opoioids are not first line, but may help as a short term measure
- Gabapentin
- Benzos
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Management of cancer pain in children
- Pain is a distressing and prevalent symptom toward end of life in children with cancer
Potential treatments:
- Rads
- Epidural or intrathecal infusions if systemic analgesia has failed
- Neurolytic blocks
- Opioids (watch for opioid induced neurotoxicity and rotate if this happens)
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Intractable pain in children
- No guidelines around palliative sdation in pediatrics
- Sedation can be controversial
- If required, use opioids, benzos, neuroleptics, or anesthetic agents
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Pediatric Palliative Care globally
- Most children with advanced, incurable disease die in hospital or at home
- 70% of world's children have no access to peds palliative care, just 6% have access to integrated services
- Greater disease burden in developing countries (50% of pediatric deaths happen in Africa)
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Team structure in pediatric palliative care
- Doctors
- Allied health
- SW
- Volunteers
- Chaplains
- Palliative care nurses
Care best delivered by a team with excellent collaboration and team work. May occur formally (through case conferences) or informally (electronic means)
Ensure family knows who to call in which scenario and if there is an exacerbation or change in clinical status
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Framework for nursing in palliative Care
1. Palliative approach ( 'primary' palliative care - provided by any HCP with a core set of knowledge and skills to someone with a life threatening illness)
2. Specialist intervention - Inteventions provided outside of palliative care (e.g. wound care nurses, etc.)
3. Specialist palliative care - care by those with qualifications, advanced practice skills in PC at hospital, home, or hospice
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Family support volunteers in peds palliative
Importance
- Flexible and cost-efficient way to improve supports
- Fill a support gap without leaving family indebted to friends and family
- Can assist with practical tasks around the home and providing sibling support
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Symptom assessment tools for children
Memorial system assessment scale (MSAS) 10-18
| - adapted from an adult version to provide multidimensional info about the symptoms experienced by children
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Seizure control in children
- Seizures may occur new or as part of a long standing, underlying seizure disorder
Management:
- Work up for causes (e.g. cerebral mets, infection, metabolic disorder, hypoxia)
- Review anticonvulsants
- Buccal midazolam (preferred to rectal), effective in treatment seizures refractory to lorazepam, phenytoin, and phenobarb
Refractory status epilepticus
- Barbiturate induced coma or GA
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Spinal cord compression in children
- Unusual complication
- Presents with back pain
- Ensure treatment while patient is still ambulatory to retain function
Treatment:
- Radiotherapy
- Steroids
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Terminal delirium in children
Management
| - Haldol for delirium, may add benzos for agitation
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Somnolence/Fatigue in children
- Limited evidence to support use of stimulants
| - In children, common practice to rotate opioids
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Insomnia in children
- Lifestyle changes (exercise, exposure to sun, sleep hygiene)
- Low dose amitriptyline may be helpful
- Melatonin is a reasonable alternative
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Considerations in bereavement work with families
- Loss of a child defies the natural order of life and social expectations
- Child represents hopes and dreams for the future of his and her parents, grandparents, extended families
- Hope is a key element in bereavement work as it represents a link to the future
- Consider impact of past trauma for family members (e.g. refugee families, other losses) as this may compound grief with the difficult relationship it has with hope.
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Impact of parental death on children
- Immediately after, wide range of emotional and behavioural symptoms classified as 'non-specific disturbance'
- low levels of psychological distress overall and psychiatric disorders are uncommon
- Increased levels of anxiety with focus on concerns about further loss, safety of other family members, fear of separation
- Many cumulative, moderating factors that influence the outcome over time
Overall, protective factors include:
- Higher levels of caregiver warmth, coping styles
- Lower levels of caregiver mental health problems
- Healthy discipline and communication styles
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Themes of bereavement in adults who experienced the death of a parent as a child
1. Disruption and continuity
2. Recognition of loss
3. Family dynamics - roles, repsonsibility, and context
4. Public world of bereavement
5. Identity and aspects of personal growth
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Timing of sharing information regarding death with children
- Avoid children learning new by overhearing it
- Well-intentioned protection may be experienced as exclusion
- Discuss changes as they occur (especially in appearance and functional status) and use these markers to discuss the probability of death within weeks or days with children school age or above
- Some children may ask about death directly in the context of seeing a parent get worse or sick
- Consider asking, "Do you know what could happen if Mum gets even more unwell? Or different parts of her body stop working?"
For younger children:
- Acknowledge functional changes as they pertain to the child (e.g. "Dad used to be able to take walks with us, but now he can't because is more unwell, so he stays in bed.")
- With pre-school children, conversations about death may be most meaningful after death has occurred.
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Decisions about setting of EOL care in a family context
- No one answer
Inpatient hospice or hospital
- Challenge may be dividing time between hospital and home with children
- Thoughtful, familiar adults to help at home can help to continue with regular routine
- Visits with children and family member should be facilitated whenever possible
Home hospice
- Have the dying person in a room with a door if possible (allows children to titrate exposure to ill parent/medical equipment)
- Advantage of maintaining routine, everyone staying at home, more access to well parent
- Challenge of dying process in the home - requires more discussion of changes in medical status, questions or misconceptions about what is happening
- Clinicians should anticipate symptoms and treatments and explain what the physical process of dying looks and sounds like
- Give thought to where children shoulkd be when the body is removed
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Visits between ill parents and children
- Facilitate visits whenever possible when parent is in hospital
- Avoid visits where a parent is agitated or delirious
1. Prepare:
- Prepare kids with description of setting, medical equipment, roommates, status of the parent (physical, functional). For younger children, compare to when they last saw their parent.
- Children who express reluctance may have particular worries (e.g. seeing parent die, blood, etc.) and should be provided with reassurance or contingency plans
- Bring supportive adult who can leave when the child is ready
2. For younger children:
- May only tolerate brief visits
- Provide structure or activity
3. Debrief
- Ask child what was the most fun, scary, uncomfortable - opportunity to debrief and support
4. Last visits
- Meaningful for children once they have an understanding of the finality of death
- Older children may want a few minutes alone with the parent
- Older children should be offered the chance to be called to the bedside near the end of life or immediately after death
If visits are not possible, consider other kinds of contacts (notes and cards, recordings of the parent reading a book or singing)
Reiterate that there are many opportunities to say goodbe (before death, immediately afterward, funerals, private moments of reflection or prayer)
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Legacy leaving by parents
- Parents may wish to leave a specific legacy for their children
Examples:
- Usual family photos etc.
- Letters or audio recordings
- Specific meaningful objects
- Annotated books, music, or movies that have been important to them
- Children may want to choose special objects to keep themselves either before or after
- Wider community may be asked to contribute to a memory book that can be shared with children later
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Quality indicators of a 'good death' in a pediatric population
Some overlap with adult domains
- Pain/symptom management
- Emotional/spiritual support
- Maximizing QOL
- Need for family respite
- Continuity of care
- Care matching with individual values and preferences
Others may have particular nuances
- Collaborative decision making involving family and decision makers as well as informing children to the extent that they are capable and desire involvement
- Maximise safety and effectiveness of medication interventions
- Timely introduction of bereavement services (nearly all pediatric deaths are viewed as untimely)
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Four types of populations looked after in pediatric palliative care
1. Progressive conditions in which treatment is exclusively palliative after diagnosis
2. Conditions for which curative treatment is possible but may fail
3. Conditions involving severe, non-progressive disability causing extreme vulnerability to health complications
4. Conditions requiring intensive long-term treatment aimed at maintaining quality of life
