16.2 (16.2) Care of children with advanced illness

Question 1

List four roles of the palliative care nurse for home PC of child*

Answer 1

-creating/implementing care plan in conjunction with primary treating team and other involved services
-assessment of home and equipment needs
-identifying family unit and wider community support
-identifying and ensuring appropriate community clinicians are involved
-providing appropriate info (at family’s request) to community groups such as schools, religious support, volunteer services etc
-generating a plan for anticipated deterioration and/or emergency situations
-generating EOL plan
-accurate reporting systems for any interventions

Question 2

Validated symptom assessment tools focus on what three symptoms?

Answer 2

pain
nausea
fatigue

Question 3

Name a multidimensional symptom assessment tool in children

Answer 3

memorial symptom assessment scale

Question 4

What is the most common presenting symptom in children with spinal cord compression? What are the two key aspects of management?

Answer 4

presenting symptom - back pain

radiotherapy and steroids

Question 5

What is the dose of buccal midazolam for seizures in children

Answer 5

0.3mg/kg per dose

Question 6

List four causes of terminal dyspnea in children

Answer 6

cardiac failure *
intrinsic lung disease*
Infection *
pulmonary mets*
muscle weakness
acidosis

FS - vindicate

Question 7

A family observes their dying child develop an agitated terminal delirium. They are concerned this demonstrates she is very emotionally upset. What do you tell them?

Answer 7

The etiology of the delirium is multifactorial with physical rather than psychological process

Question 8

List four causes of constipation in children with terminal illness

Answer 8

◆ reduced physical activity
◆ mechanical obstruction
- fecal impaction
- MBO
◆ low fluid intake
◆ metabolic derangement
◆ poor diet
◆ bowel atony due to opioids

FS:
Endo, metabolic
Anatomical (fecal impaction, MBO)
Treatment (opioids)
Other - decreased activity, poor diet, poor fluid

Question 9

List four aetiologies for fatigue in a child with terminal illness

Answer 9

anemia
poor nutrition
insomnia
metabolic derangement
increased work of breathing
medications
psychological factors

FS - vindicate - NP

Question 10

List two pharmacological interventions for fatigue in children with advanced disease

Answer 10

stimulant medication (?methylphenidate)
opioid rotation

Question 11

List two lifestyle interventions for insomnia for children with advanced illness. List two medication options

Answer 11

improved sleep hygiene
increased sun exposure
exercise

low dose amitriptyline
melatonin

Question 12

List three benefits of regular mouth care in children with advanced illness

Answer 12

◆ promotes comfort
◆ improves ability to eat and drink
◆ prevents halitosis
◆ helps identify:
- xerostomia
- mucositis
- candidiasis
- ulceration

Question 13

List three benefits to a child of having experienced bereavement from death of a sibling (5th)

Answer 13

◆ are less judgemental
◆ more compassionate and tolerant
◆ have a desire to help others who are grieving
◆ prioritize family

Question 14

List the five steps to setting up a quality improvement program in pediatric palliative care (5th)

Answer 14

1. identify a quality lead to create and implement a quality strategic plan
2. identify defined standards and measure the clinical service against the standards
3. develop measures of quality for PC
4. Collate and evaluate data from the quality programme and look for opportunities for improvement
5. implement ongoing quality reviews as part of clinical care

FS:
Identify Lead (person)
Identify Standards
Identify Measures
Collect Data
Ongoing reviews

Question 15

What are 5 different treatment options for dyspnea in children?

Answer 15

Fan
O2
opioids
benzo if anxiety component
CBT

FS - dyspnea management

Question 16

What would you treat an agitated terminal delirium in children with?

Answer 16

Haldol + benzodiazepine

Question 17

In a study of children with cancer, Bluebond-Langner (1978) found that children’s views of their illness changed between these THREE stages over time.

Answer 17

◆ from a serious but treatable disease ->
◆ to a disease which could not be cured ->
◆ to a disease from which they would die.

Question 18

Name ONE cause that precipitated children’s understanding of their illness. (Bluebond-Langner,1978)

Answer 18

◆ sentinel events such as relapse or new symptoms
◆ experiences of other similarly ill children whom they encountered in the hospital or clinic.

Question 19

Name TWO basic guidelines for clinicians on how to navigate within the child–parent–clinician triad.

What is this approach called?

Answer 19

◆ communication compartmentalization and filtering
◆ clarifying what each side understands
◆ clarifying what/how much each side wants the other side to know and why

Shuttle diplomacy / arbitration approach

Question 20

What are CYP (children and young persons) preferred role in making major vs minor decisions?

Answer 20

They prefer lesser/background role for major decisions (e.g. accepting tx) and have more role with minor decisions (e.g. when the tx takes place)

WP: above is from one study (Coyne et al, 2014). CYP involvement is complex & situational but likely relational (ie. involving parents/caregivers) is my best tldr.

Question 21

Is it true that as CYP grow older - they should have increasing information and decision making authority?

Answer 21

Not necessarily as [preferred involvement is a shifting and non-linear experience; CYP may want to engage in participation by having greater or lesser access to information (rather than being involved in treatment choice)