This document discusses pediatric palliative care, including: - Defining pediatric palliative care as relieving suffering and improving quality of life for children with life-threatening conditions and their families. - Common pediatric conditions that require palliative care like cancer, heart disease, prematurity, and neurological disorders. - Key aspects of care include managing pain, other symptoms, psychological distress, and end-of-life care while communicating effectively with children and families. - The importance of an interdisciplinary approach to provide holistic care from diagnosis through the end of life.

1. Prof. Chinna Devi M.
Principal, SBBSIN

2.  To identify pediatric conditions
 To assess and manage pain in children
 To assess and manage other symptoms in children
 To communicate effectively with children

3.  What is pediatric palliative care?
 Which are the conditions require ppc
 Persistent pain in children
 Gastro intestinal symptoms
 Respiratory Symptoms
 Neurological symptoms
 Communicating with children and families
 Psychological distress
 End of life care

4.  Interdisciplinary care that aims to relieve suffering
and improve quality of life for children with life-
threatening/Life-limiting conditions and their
families.
WHO definition:- Active total care of the child’s body,
mind and spirit.

5.  From Diagnosis(including Neonatal care)
 Evaluate and alleviate the child’s physical,
psychological, social and spiritual distress.
 Multidisciplinary approach
 Even with limited resources
 Place; tertiary care facility, community health center,
home

6. Pediatric Conditions Requiring Palliative Care

7.  Curative treatment may be feasible but can fail
 Access to palliative care services may be beneficial
alongside attempts at life prolonging treatment and/or
if treatment fails
 Advanced or progressive cancer or cancer with poor
prognosis.
 Complex and severe congenital or acquired ht disease
 Trauma or sudden severe illness
 Extreme prematurity

8.  Conditions where early death is inevitable
 Long periods of intensive treatment aimed at prolonging life
 Cystic Fibrosis
 Severe Immune-deficiencies
 HIV Infection
 Chronic or severe respiratory failure
 Renal Failure (Non Transplant cases)
 Muscular Dystrophy, Myopathies, Neuropathies
 Severe short gut, TPN dependent

9.  Progressive conditions without curative treatment options,
where treatment is exclusively palliative after diagnosis and
may extend over many years.
 Progressive metabolic Disorders
 Certain Chromosomal disorders ( Trisomy 13 and18)
 Severe Osteogenesis imperfecta
 Batten Disease

10.  Irreversible but non progressive conditions with complex
health care needs leading to complications and likelihood of
premature death.
 Severe cerebral palsy
 Prematurity with residual multi-organ dysfunction or severe
chronic Pulmonary disability.
 Multiple disabilities following brain or spinal cord infectious,
anoxic or hypoxic insult or injury
 Severe Brain Malformations( eg; holoprosencephaly,
anencephaly.

12.  Most Pc programs are for adults with cancer
 Many children with terminal conditions die in
hospital
 Serious impact on the quality of life and death of
children and the quality of life of the families
 Lack of data on PPC need
 Lack of knowledge among health professionals
 Lack of availability of essential medications

13.  Pain is the most prevalent symptom experienced by;
 80% of children with cancer
 67% of children with progressive non-malignant
diseases
 55% of children with HIV/AIDS

14. Nociceptive(Activation of Nociceptors
 Somatic
1. Surface Tissues(Mucus of mouth, nose, urethra, anus etc)
2. 2. Deep Tissues(bone, joint, muscle or connective tissue)
 Visceral (thorax, abdomen)
Neuropathic
1. Structural damage and nerve cell dysfunction in the
peripheral or central nervous system
Mixed Pain
 Somatic, visceral and neuropathic pain all the same time or
each separately at different time

15.  Lack of knowledge in pain assessment and
management in pediatrics
 Diverse groups: Neonates, infants, preverbal toddlers,
adolescents,
 Understanding of safe use of opioids
 No clear protocols and guidelines to use
interventional pain management techniques and non
pharmacological therapy

16.  Latrogenic, post-surgical, invasive procedures
 Progressive disease
 Neuropathc pain
 Complex regional pain syndrome
 Peripheral nerve injury
 Spinal cord injury
 Prevention and relief of total pain: physical,
emotional, spiritual and social

17.  Where
 How much
 Ask
 Child self report of pain
 Family
 Assess yourself
 Pain assessment scale adapted to age

18. FLACC Scoring Indicators
Scoring
0 1 2
0: Relaxed
and
comfortable
1-3 Mild
discomfort
4-6:Modrate
pain
7-10: Severe
discomfort or
pain or both
Face
Legs
Activity
Cry
Consolability
•No particular
expression or
smile
•Normal position
or relaxed
•Lying quietly,
normal position,
moves easily
•No cry(awake or
asleep)
•Content, relaxed
•Occasional
grimace or frown,
withdrawn,
disinterested
•Uneasy, restless,
tense
•Squirming, shifting
back and forth,
tense
•Moans or
whimpers,
occasional
complaint
•Reassured by
occasional
touching, hugging
Frequent to
constant frown,
clenched jaw,
quivering chin
•Kicking or legs
drawn up
•Arched, rigid or
jerking
•Crying steadily,
Screams or sobs,
frequent
complaints
•Difficult to console
or comfort

19. Instructions for usage:
◻ Ask the child to choose the face that
best describes how much pain he/ she
has

20.  Mark each box with colour the child selects

21.  Numeric Rating Scale
Instructions for usage
◻ Ask the child: “On a scale of 0 to 10, with 0 meaning “no
pain” and 10 meaning the worst pain you can imagine, how
much do you hurt right now?”
◻ 1-3: mild, 4-6: moderate, 7-10: severe pain

22.  Pharmacological
 Analgesic Medications
 Adjuvant Medications
 Non Pharmacological Interventions
 Relaxation Therapy
 Distraction Play Therapy
 Music Therapy
 Occupational therapy, Physiotherapy, Massage
 Acupuncture, Acupressure, Aroma therapy

23.  By the ladder
 By the clock
 At fixed interval of time
 Next dose before previous dose effect wornoff
 By the appropriate route
 By the child
 Individualized and monitor response

25.  Step 1 for mild pain
o Paracetamol and NSAIDs
o +/-Adjuvants
 Step 2 for Moderate or strong pain
o Strong opioids
o +/-Step1 non-opioids
o +/- adjuvants
 Weak opioids are not recommended in children
-many lack the enzymeconverting codine in to
morphine
-No safety data of tramadol in children

27.  Constipation - 95%
 Nausea/ Vomiting
 Drowsiness, Confusion, Itching
 Urinary retention

28.  Neuropathic Pain: Antidepressants and antiepileptic
 Bone Pain: NSAIDs( diclofenac)
 Muscle Spasm ( Lorazepam)

29.  Weaning of opioids should be done slowly by
tapering the opioid dose
 For short term opioid therapy (7-14 days), the
original dose can be decreased by 10-20% every 8
hrs.
 For long term therapy protocol, the dose should be
reduced 10-20% per week

30.  Pain
 Nausea, vomiting, lack of appetite, wt loss
 Difficulty in swallowing, mouth sores
 Psychological symptoms: sadness, nervousness,
worrying, irritability, Drowsiness
 Cough

31.  Determine and treat the underlying cause of the
symptom including non physical causes
 Relieve the symptom without creating a new
symptoms or unwanted side effects
 Consider different types of interventions: drug and
non drug interventions
 Consider whether the treatment is of benefit to the
individual patient

32.  Nausea and vomiting: Identify the causes like
 Drug related
 Eosophagitis, gastritis, constipation, ileus etc
 Headache: increased intracranial pressure
 Infection: renal or hepatic failure
 Related to position or movement

33. Symptom/ Sign/Drug Possible cause
Blood strained vomiting(hematemesis) Oesophagitis, swallowed blood,peptic ulcer,
oesophageal varices
Bile stained vomiting Upper GIT obstruction
Undigested milk / food Gastric outlet obstruction
Projectile vomiting Raised ICP, Pyloric stenosis
Fever, dysuria, frequency, rigors UTI, Pyelonephritis
Chemotherapy, radiotherapy Toxicity, radiation enteritis
Bulging fontenelles, HTN, bradycardia Raised ICP, hydrocephalus, space
occupying lesion, intracranial bleed
Photophobia, Meningismus ( neck stiffness) Meningitis
Smell of ketones, coma DKA, other metabolic disorders

35.  Non-pharmocological measures
 Explain, reassure, calm environment
 Avoid unpleasant odor, smell of food
 Small frequent meals, boiled and backed food
 Good oral hygiene
 Pharmacological treatment
Antiemetic :Anticipate need if possible, use adequate,
regular doses

36.  Identify cause and treat accordingly
 Inactivity, decreased mobility, poor oral intake,
 Drug induction
 Anal fissure
 Non –pharmacological measures
 Increase fluid and fiber intake
 Improve mobility
 Provide privacy, encourage for regular bowel habits
 Pharmacological treatment

37.  Maintenance of regular Bowel movements with stool
softener (lactulose), Stimulant laxative
 Anal Fissure: Ca channel blocker cream before
defecation
 Soften and clear any impacted matter
 Glycerin liquid or suppositories
 If no relief, micro enema
 Manual evacuation of hard impacted stools

38.  Identify cause
 Infection
 Malabsorption
 Constipation with overflow
 Drug induced
 Non pharmacological Measures
 Dietary modifications
 Food and Hand Hygiene

39.  Rehydration (ORS, IV fluid)
 Loperamide in chronic diarrhea
 Antispasmodic(dycyclomine, buscopan) for coliky
pain.

40.  Identify causes of malnutrition
 Not enough food to eat, inability to swallow
 Anorexia, Nausea
 Sore mouth
 Encourage enteral feeding; oral or NG tube
 Nutritional supplements
 Liquid diet

41.  Assess for
 Infection, brochospasm
 Postnasal drip tumor
 GERD
 Non pharmacological measures
 Sit up
 Air humidification
 Chest physiotherapy to drain secretions
 Avoid smoking, , stove, kerosene lamp

42.  Antibiotics
 Salbutamol nebulisation
 Bronchospasm
• Post-nasal drip: upright position, saline nasal drops/ spray,
antihistamines

43. ◻ Identify cause
� Airway obstruction
� Bronchospasm
� Aspiration
� Hypoventilation
◻ Non-pharmacological measures
� Sit up, reassurance, loosened clothing
� Relaxing and distracting techniques, music, aromatherapy
� Breathing exercises
� Fan, open window (cold stimuli of trigeminal nerve area
suppresses vagal nerve and decreases RR)

44. ◻ Saline Nebulization to help loosen secretions and to moisten
the airways
◻ Nebulized bronchodilators if bronchospasm
◻ Pharmacological treatment
� Low dose morphine (stat dose of 10-15% of total 24-hour
dose)
� Low dose (midazolam for acute onset dyspnea, diazepam/
lorazepam for anxiety component)
� Hyoscine butylbromide (Buscopan) to dry up secretions
� O2 only if hypoxemia

45. ◻ Identify cause, assess if aggressive treatment is required or if
it’s an end-of-life event
� Aspergillosis, TB, lung abscess
� Lung/ airway malignancy
� Hematological malignancy, bleeding diathesis
� Pulmonary embolism, pulmonary hypertension
◻ Non-pharmacological measures
� Stay calm, reassure (frightening experience)
� Sit up or lying on the side of pathological lung
� Dark colored bed sheets and clothes to clean
◻ Pharmacological treatment
� Trenexamid acid
� Sedation (BZP + strong opioid)

46. ◻ Identify cause
� Hypoxia, hypoglycemia
� Fever
� Raised ICP, brain tumor
� Neurological disease
◻ Non-pharmacological measures
� Anticipatory instructions to family
� No panic. Check watch
� Avoid injury; side-lying position
� O2. Check glucose
◻ Pharmacological treatment if seizure >5 min
� Buccal midazolam 0.3 mg/kg or lorazepam (0.05-0.1 mg/kg)
� Intrarectal diazepam 0.3-0.5 mg/kg
� If no response: repeat after 10 min; if no response: IV

47. ◻ Identify cause
� Drug-induced (metoclopramide)
� Genetic disorder, birth asphyxia, encephalopathy, infection,
� Intracranial bleed
◻ Non-pharmacological measures
� Avoid trigger (noise, light, pain, urinary retention,
constipation, unfamiliar contact)
� Gentle handling by familiar people
� Address problems of mobility, feeding, bathing, etc.
� Regular physiotherapy by care taker
◻ Pharmacological treatment
◻ Baclofen, BZP, tizanidine
◻ IM Botulin toxin

48. Communication

49. ◻ Sick child needs symptom relief + emotional and
psychological support
◻ Parents need support when child asks about illness
� Various stages of development and understanding of illness
and death
� Preschool children: death is departure, absence
� School children: responsibility and guilt
� 9-10 years: adult concept of death inevitable, universal and
irreversible
◻ Diagnosis/ prognosis may be revealed truthfully and tactfully
to children and teenagers

50. ◻ Verbal and non-verbal communication
◻ Communicating with children
� Body language
� Play language
� Spoken language
� Observation
◻ Body language
� Child’s eye contact, looking relaxed/ tense, way of walking
� Child aware of our body language

51. ◻ Play language
� Adults speak, children play
� Children show, play their life: drawing, toys, doll
� Story telling builds trust and rapport
◻ Spoken language
� Short sentences easy to understand
� Children under-report their problems, out of fear

52. Psychological Distress

53. ◻ Children react to the distress and emotions of adults
◻ Empathetic listening
◻ Open communication
◻ Relaxation – music
◻ Psychotherapy
◻ Mild anxiolytic (alprazolam, lorazepam)

54. ◻ Chronic and terminally ill children
◻ Causes: disease-related, treatment-related,
psychological
◻ Psychological counseling:
� Promote the child’s autonomy, part in decision-making
� Draw on strengths
� Discuss short-term goals
◻ Antidepressant (aminotriptylin, imipramine) if
counseling fails

55. ◻ Disease related:
◻ Treatable causes:
� Malnutrition, anemia, infection
� Psychological – anxiety, depression, insomnia
◻ Drugs-induced: opioids, tranquilisers, sedatives,
antidepressants…
◻ Sleep cycle disturbance
� Anxiety, fear of impending death
� Advise timetable for meals, activities and sleep
◻ Importance of play

56. End of Life Care

57. ◻ Aim should be to relieve the suffering of child and
parents
◻ Home care is best care
◻ Empowering family members should be our aim
◻ There is need of substantial work to ease the
suffering in children with cancer at end of life at
home.
◻ Unfortunately, many children die at home without
relief of their symptoms (Wolfe et al)

58. ◻ Non-pharmacological measures
� Fluid restriction
� Gentle suction
◻ Pharmacological:
� Glycopyrrolate
■ 0.01-0.02 mg/kg IV q4-6 hours
■ 0.04-0.1 mg/kg po q3-4h
� Atropine 0.01-0.02 mg/kg po (max 0.4 mg)

59. ◻ Evaluate for pain, anxiety, hypoxia, poor sleep, depression
◻ Non pharmacological
� Familiar people/ objects
� Low lighting
� Soothing tones, music
� Decrease monitoring
◻ Pharmacological
� Lorazepam 0.05 mg/kg/dose po/IV q1-2h
� Haloperidol 0.05 mg/kg po (or IV with care: risk of
prolonged QT). Max 0.05 mg/kg TDS

61. ◻ Right to a pain-free death – effective symptom management by
ordinary supportive measures
◻ No guidelines in India regarding:
� With holding/ withdrawing artificial nutrition/ hydration
� With holding/ withdrawing resuscitation
◻ Parents counseling and written orders
◻ Principle of double effect
� Intended effect: e.g. to relieve suffering
� Unintended effect/ risk: e.g. shortened survival

62. ◻ Children (even young children) are very perceptive, and can
tell when something serious is happening
◻ Helping families navigate through difficult decisions, at times
conflicted about which course is best for their child… “path of
least regret”
◻ Ensuring that comfort and quality of life are minimally
affected by the impact of illness, tests, and treatments
◻ Facilitating communication about fears and worries, and open
dialogue about what to expect

63. Age Group Perception
Newborn to
Three Years
Infants and toddlers can sense when a significant person is missing,
presence of new people
No understanding of death
3-6 Years Child thinks death is reversible
Magical thinking"; believes their thoughts, actions, word caused the
death; or can bring deceased back; death is punishment for bad
behavior
6-9 years Child begins to understand the finality of death
9-13 years Child's understanding is nearer to adult understanding of death; more
aware of finality of death and impact the death has on them.
Delayed reactions, Spiritual affects of life
13-18 years Perception about death is similar to that of Adult

64. ◻ A child who is no longer able to process food/ fluids
stops eating/ drinking
◻ Parents counseling to reduce anxiety
◻ Encourage other ways to provide care: massage,
mouth care, positioning to avoid pressure ulcer
◻ Benefits of dehydration during dying phase: less
respiratory secretions, GI symptoms, edema/ ascites,
urine output, level of consciousness
◻ Patients slip way quietly and comfortably

65. ◻ Intentional lowering of consciousness for children
with intractable symptoms at the end of life
◻ Refractory symptoms: pain, delirium, dyspnea,
massive bleeding, seizure, etc.
◻ Reversible in ¼ patients
◻ SC or IV infusion of opioids, BZP or neuroleptics

66. ◻ Most painful experience for parents and siblings
◻ Help with formalities
◻ Make family feel that they loved and cared for the child in the
best possible way
◻ Bereavement counseling to help family cope with grief:
� Take care of themselves physically
� Deal with feelings of guilt and blame
� Allow surviving children their own method of grieving
◻ Abnormal grief: seek specialist

67. THANK YOU