Pediatric Palliative Care Flashcards
Should children be told about death and dying?
- 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
Factors in how a child can understand death and illness
- 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
Concepts of death in infancy (0-2 years of age):
Key concepts, example, practical implications
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.
Concepts of death in early verbal childhood (3-6 years of age):
Key concepts, example, practical implications
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
Concepts of death in middle childhood (7-12 years of age):
Key concepts, example, practical implications
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
Concepts of death in adolescence (>12 years of age):
Key concepts, example, practical implications
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
Elements of sharing information about serious illness and death with a child
- 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?
How to respond to a question of how to talk to a child about serious illness/death without crying
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
What is helpful in supporting a child through serious illness or death?
- 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.
How best to support the young sibling of a child who is dying
- 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.
How to respond to a child’s question: “Is he sleeping?”
” He might look like he’s sleeping, but being dead is very different than sleeping”
How to respond to a child’s question: “What is dead?”
“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.”
How to respond to a child’s question: “What happened to my sister?”
Use honest language and NOT cliches (e.g. gone away, gone to sleep). Use the word death, dead, and dying.
How to respond to a child’s question: “Why did she die?”
“Your sister died because _____ and it just couldn’t be fixed”
How to support a child’s involvement at the time of death?
- 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”
How to deal with a child’s imagination around death
- 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
How to deal with guilt around death
- 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.”
Should children attend a funeral?
- 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.
How can survivors be supported as they grow older?
- 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
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)
- 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
Pain and symptom assessment in children
- 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
Point at which 0-10 scale can be used for kids for assessment of pain or symptoms
7-8 year old developmental capacity
Point at which modified pain rating scales with faces of children in varying degrees of distress can be used
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’)
Unique aspects of pain and symptom management for children: Communication
- 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
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
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
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
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)
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
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
Principles of analgesic therapy in children
Always ensure a DETAILED assessment has occurred
- Aim for pain relief with lowest effective dose and start with IR to determine opioid requirements, then go to SR
- Anticipate, prevent, and actively treat side effects
- Use around the clock dosing with breakthrough at 10% TDD and at frequency according to peak onset of action (q30mins to q60mins)
- 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 - Always start a bowel regimen with opioids
- Rotate opioids if there are side effects
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
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
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
Investigation of dyspnea for children
Depending on circumstance:
- CBC
- CXR
- NP swab
etc.
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
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
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
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)
