What is quality paediatric palliative care?
- is whole-person, holistic care that improves quality of life, manages symptoms, addresses suffering, and respects family choice in children with life-limiting conditions, their families and the teams that care for them.
When is paediatric palliative care appropriate?
- appropriate at any stage of the illness and provided together with disease-directed treatment
What kind of services does Canuck place provides?
- consultation for pain and symptom management,
- advance care planning, and
- enhanced communication support,
- family support, and
- care coordination
What kind of program/therapy does Canuck Place offer?
- outreach and community support through its 24/7 nursing phone line, an enhanced community care program, and various counselling/therapy programs to support children and families throughout the province at home.
- Psychosocial and spiritual counselling support are available to all children and families in the program, which can include play therapy, music therapy or art therapy, both in person or virtually.
- Recreation therapy plays a role both in the hospice and in the community to offer memory-making opportunities and legacy-building.
What are some loss/ unexpected outcomes parents experience during pregnancy/birth/labour?
- the loss of a pregnancy,
- the loss of a “normal” delivery,
- the loss of a “healthy” term infant,
- the loss of taking their infant home when they are discharged themselves
Why is it important to frame your update to the family within the context of their own illness understanding?
- Everything should be within the family’s illness understanding.
- Be cognizant to build on their current knowledge (this helps a nurse know in what depth or background they may need to describe something, what questions parents still have, the meaning of some things they are seeing).
- Framing your update within the context of the family’s illness understanding meets the family where they are at—
- you’re acknowledging what they know (or if what they know isn’t totally accurate then using “I wish” to acknowledge what they shared and then framing your update by “I worry” relating to the child’s functional status).
How would you respond to Tanya and Sarah’s questions? Write your response below. Remember to include your morning assessment within the context of the family’s illness understanding.?
I worry given Michael’s current infection, his increasing ventilator settings and oxygen needs, as well as how fragile he was during his morning care, that his health is worsening. Sarah, you asked whether I think Michael is suffering. I am curious to understand, knowing you have been at the bedside since he was born, what does suffering look like for you in Michael? How does Michael show you he is comfortable and uncomfortable?”
What should treatment of pain and symptom management include?
- 3P’s: pharmacological, physical, and psychological interventions
- nurse’s assessment should incorporate the family’s input and value their opinion, and they should establish treatment plans together.
What are 3 common pain behaviours seen in infants?
- Brow bulge: bulging, creasing and vertical furrows above and between brows occurring as a result of the lowering and drawing together of the eyebrows
- Eye squeeze: squeeze or bulging of the eyelids; bulging of the fatty pads of the infant’s eyes is pronounced
- Naso-labial furrow: the pulling upwards and deepening of the naso-labial furrow (a line or wrinkle which begins adjacent to the nostrils and runs down and outwards beyond lip corners)
When assessing for whether a symptom is distressing or not, what are you looking for? What are the subjective and objective data that are relevant to your assessment?
Objective data:
- Pain responses such as brow bulge, eye squeeze, naso-labial furrow,
- crying,
- vital signs,
- 02 requirements
Subjective data:
- Parents’ understanding of their child’s discomfort,
- how pain is impacting the infant’s ADLs such as feeding, bathing, etc.
What specific things you are assessing to determine whether SOB is present (3)?
Assess:
- respiratory rate,
- 02 sats,
- work of breathing (subcostal, intercostal, substernal, etc.)
- WITH overall comfort.
What are specific things you are assessing to determine whether seizure is present (3)?
- can be difficult to assess in infants.
important that we note specific symptoms:
- movements,
- eye deviations,
- vital signs,
- onset and length,
- activity preceding seizure,
- LOC,
- colour changes etc.
What are some pharmacological intervention can be provided for infant with pain? SOB? seizures?
- pain: Tylenol, Advil, morphine, fentanyl
- SOB: Opioids, oxygen, benzodiazepines, corticosteroids, bronchodilators
- seizures: Phenobarbital, midazolam, lorazepam
What are some physical interventions can be provided for infant with pain? SOB? seizures?
- pain: Skin-to-skin, containment, suck reflex, soothing voice, rocking, etc.
- SOB: Skin-to-skin, massage, oxygen, holding, rocking, positioning
- seizures: Ensuring safe environment, positioning
What are some psychological interventions can be provided for infant with pain? sob? seizures?
- pain: bond with parents
- sob: Supportive presence, skin-to-skin
- seizure: Working with families in distress, anxiety management, education, supportive presence
How is assessing and addressing pain in premature infants different? How is it similar?
- Premature infants cannot express pain as well as term infants, but we know that they do experience pain (possibly to a higher degree than term infants).
- It’s important to assess premature infants using a valid scoring tool and have an awareness of how preterm infants express and respond to pain.
- When we are providing pain management in the context of palliative care, it is important to be very aware of pain and potential pain responses in both term and preterm infants and provide adequate pain control.
What are some common symptoms of dying infants include the following (5)?
- Changes in breathing. Slow and fast breathing or long periods without a breath are common. Moaning or humming on exhale may happen with breaths, and this does not necessarily indicate discomfort.
- Noisy breathing. This may be from secretions the infant is unable to clear from his or her throat or lungs. It does not often cause discomfort. No deep suctioning is recommended. Gentle oral suctioning may be appropriate if it provides comfort to the child.
- Skin colour changes. Pale, bluish, mottled, or blotchy skin is common. This is from a decrease in oxygen and slowing down of the body’s circulation.
- Decreased urine output.
- Lowered level of consciousness. The infant may appear to be sleeping more than usual.
