palliative care for children

1. PEDIATRIC PALLIATIVE CARE
DR. LIZA C. MANALO, M.Sc.
PALLIATIVE CARE
Philippines

2. FOUR DOMAINS
PHYSICAL
SYMPTOMS
PSYCHOLOGICAL
SYMPTOMS
PALLIATIVE CARE
SOCIAL NEEDS
EXISTENTIAL OR
SPIRITUAL NEEDS

3. DOMAINS OF QUALITY PALLIATIVE CARE
Domain 1: Structure and Processes of Care
Domain 2: Physical Aspects of Care
Domain 3: Psychological and Psychiatric Aspects of Care
Domain 4: Social Aspects of Care
Domain 5: Spiritual, Religious and Existential Aspects of Care
Domain 6: Cultural Aspects of Care
Domain 7: Care of the Imminently Dying Patient

4. DOMAINS OF QUALITY PALLIATIVE CARE
Domain 2:
Physical Aspects
of Care
Symptom Control

5. PAIN or DYSPNEA
WHO 3-step Analgesic Ladder
Step 1: Non-opioids
Step 2: Weak Opioids
Step 3: Strong Opioids
Morphine
 Neonates (<1 month) : 500microgram/kg/24hr 4 hrly divided doses
 Infants: <1 yr = 500microgram/kg/24hr 4 hrly divided doses
1 – 2 yrs=1mg/kg/24hr 4 hrly divided doses

Children:
2-12yrs=1mg/kg/24hr 4 hrly divided doses
>12 yrs=30mg/24hr 4 hrly divided doses
orally, SL, PR, round the clock
- Himelstein et al, N. Engl. J. Med, 2004
http://fohs.bgu.ac.il/inpact/images/Documents/commondrugs.pdf

6. Opioids for Palliation of Dyspnea
The exact mechanism is unclear.
 The drugs' cardiovascular effects are thought to be most likely
responsible for relieving dyspnea.
 Therapeutic doses of opioids:
 produce peripheral vasodilation
 reduce peripheral vascular resistance
 inhibit baro receptor responses
 decrease brainstem responsiveness to carbon dioxide
(the primary mechanism of opioid induced respiratory
depression)
 lessen the reflex vasoconstriction caused by increased
blood PCO2 levels so that the perception of dyspnea is
reduced
 Furthermore, opioids reduce the anxiety associated with
dyspnea.


7. CONSTIPATION

Due to use of opioids
MAINSTAYS OF THERAPY
Stimulant (e.g. senna syrup)
 Bisacodyl: 1 mo. – 2 yr 5 mg as single daily dose, oral or PR
2-12 yrs = 5 mg as single daily dose , oral or PR
>12 yrs=10 mg as single daily dose , oral or PR
Osmotic Laxatives
 Lactulose: 1 mo. – 1 yr =2.5 ml/24 hr 12 hrly divided doses
1-2 yrs= 5 ml/24 hr 12 hrly divided doses
2-5 yrs = 5 ml/24 hr 12- hrly divided doses
5-12 yrs = 10 ml/24 hr 12- hrly divided doses
>12 yrs = 20 ml/24 hr 12- hrly divided doses
- Himelstein et al, N. Engl. J. Med, 2004
http://fohs.bgu.ac.il/inpact/images/Documents/commondrugs.pdf

8. NAUSEA
 Prochlorperazine - 0.1 to 0.15 mg/KBW orally
or PR q6-8h
 Ondansetron
for children 2-12 yrs: 0.15 mg/KBW orally or
IV q6-8h PRN
- Himelstein et al, N. Engl. J. Med, 2004
http://fohs.bgu.ac.il/inpact/images/Documents/commondrugs.pdf

9. AGITATION
Lorazepam
 Midazolam (SC)
Children (1 mo - 12 yrs): 150 microgram/kg as a
single loading dose; 1 mg/kg/24 hr continuous SC
infusion
 Haloperidol (oral, SC)
Children (1 mo – 12 yrs) 25 microgram /kg/ 24 hr
12- hrly divided doses
>12 yrs = 1 mg as single daily dose

- Himelstein et al, N. Engl. J. Med, 2004
http://fohs.bgu.ac.il/inpact/images/Documents/commondrugs.pdf

10. Pruritus
Diphenhydramine
Children 2-12 yrs: 5 mg/kg/day divided q4-6h
IV/PO
- Himelstein et al, N. Engl. J. Med, 2004
http://fohs.bgu.ac.il/inpact/images/Documents/commondrugs.pdf

11. Seizures
Diazepam
Infants (1 mo
– 2 yrs): 200 microgram/kg/24hr, 12 hrly divided dose, oral
400 microgram/kg, IV, titrated
Children 2-12 yrs = 1mg/24 once daily, oral
>12yrs=3-5mg /24hr once daily, oral
2-12 yrs= 400 microgram/kg IV, titrated
>12 yrs=5-10 mg IV, titrated
 Maximum
10 mg as a single dose. Repeat after 5-10 mins if necessary.
- Himelstein et al, N. Engl. J. Med, 2004
http://fohs.bgu.ac.il/inpact/images/Documents/commondrugs.pdf

12. Secretions
Hyoscine butyl bromide (SC)
Infant (1 mo – 2 yrs): 1.5 mg/kg/24 hr
Children 2-5 yrs=15 mg/24 hr
6-12 yrs = 30 mg/24 hr
q6h- q8h divided doses or as
continuous SC infusion
- Himelstein et al, N. Engl. J. Med, 2004
http://fohs.bgu.ac.il/inpact/images/Documents/commondrugs.pdf

13. Domain 5: Spiritual, Religious and Existential
Aspects of Care
DEVELOPMENT OF DEATH CONCEPTS & SPIRITUALITY IN
CHILDREN
>6-12 years old
 Characteristics: Has concrete thoughts
 Predominant concepts of death:




Development of adult concepts of death
Understands that death can be personal
Interested in physiology and details of death
Spiritual Development



Faith concerns right and wrong
May accept external interpretations as the truth
Connects ritual with personal identity
Himelstein et al, N. Engl. J. Med, 2004

14. Domain 5: Spiritual, Religious and Existential
Aspects of Care
DEVELOPMENT OF DEATH CONCEPTS & SPIRITUALITY
IN CHILDREN
>6-12 years old
 Interventions:




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Evaluate child’s fear of abandonment
Be truthful
Provide concrete details if requested
Support child’s efforts to achieve control and mastery
Maintain access to peers
Allow child to participate in decision-making
Himelstein et al, N. Engl. J. Med, 2004

15. Realities of Childhood Grief
 Dying children know they are dying; adult denial
is ineffective in the face of children’s emotional
perceptiveness
 Dying children experience fear, loneliness, &
anxiety
 Dying children worry, may try to put their affairs
in order, may strive to protect their parents, &
fear being forgotten
 Dying children need honest answers and
unconditional love and support
Himelstein et al, N. Engl. J. Med, 2004

16. COMMUNICATION

Communication skills



Appropriate and effective sharing of information, active
listening
Empathic and effective communication skills are essential
Organized and effective procedure for communicating bad
news with 6 steps goes by the acronym SPIKES

17. SPIKES Protocol for Breaking the Bad News
 Setting
 Perception of the patient and/or family: Find out how
much the patient and/or family knows
 Invitation: Find out how much the patient wants to know
 Knowledge: Share the information
 Empathy
 Strategy/Summary
- Buckman RA, Community Oncology
March/April 2005

18. Advance Care Planning



Part of the standard of care involved in the care of
patients with life-threatening conditions
It is our responsibility to initiate these discussions, rather
than wait for patients and family members to ask.
These discussions should occur early and regularly
throughout the course of treatment, ideally before crises
arise, and as the goals of care are clarified or change
over time. Decisions should be reviewed and revised on
a regular basis as the medical condition and knowledge
of treatment and prognosis evolve.

19. Advance Care Planning


Clarification of wishes regarding emergency and lifesustaining therapies including CPR vs. DNR should be
obtained and documented so that these advance
directives can be communicated with others, such as
home care workers and schools.
Paediatric palliative care professionals should be
involved early in discussions of treatment goals.
Discussions about palliative care should take place well
before the paediatric patient is at imminent risk of dying.

20. Any life-sustaining treatment…
 Resuscitation (CPR)
 Diagnostic tests
 Elective intubation,
 Artificial nutrition,
mechanical ventilation
 Surgery
 Dialysis, Hemofiltration
 Blood transfusions, blood
products
(parenteral or enteral) or
hydration (IVF)
 Antibiotics
 Vasopressors
 Future hospital, ICU
admissions
…aimed at maintaining organ function that only
prolong death may be withdrawn or withheld

21. POPE JOHN PAUL II :
Clarify the substantive moral difference between
Discontinuing medical
procedures that may be
burdensome, dangerous, or
disproportionate to the
expected outcome
> "the refusal of 'over-zealous'
treatment"
Taking away the proportionate
means of preserving life, such as
ordinary feeding, hydration, and
normal medical care

22. DOMAINS OF QUALITY PALLIATIVE CARE
Domain 7: Care of the Imminently Dying Patient



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
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Communication
Site of care
Resuscitation
Nutrition and fluids
Cessation of oral medications
Adequacy of analgesia
Management of distress
& unrelieved symptoms
Noisy breathing
Care issues
Duties after patient death

23. Overview of Care of Patients Imminently Dying
from Advanced Cancers

Learn to enjoy small accomplishments, and
teach that skill to patients and their families.

It is not always possible to eradicate every
symptom, but it is usually possible to bring some
degree of relief.

24. “There is nothing more that can be done” does not exist
in the lexicon of palliative medicine
There is always something that can be done, even if it is
simply to sit beside the patient and hold her hand and
offer a few words of comfort and solidarity.

25. Recognition: “DIAGNOSIS OF DYING”
Signs & Symptoms of Death Approaching

Profound tiredness and weakness




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Reduced intake of food & fluids

Drowsy or reduced cognition
Essentially bed bound
Reduced interest in getting out of bed
Needing assistance with all care
Less interest in things happening around
them





May be disoriented in time and place
Difficulty concentrating
Scarcely able to cooperate and converse
with carers
Gaunt appearance
Difficulty swallowing oral
medication
Guidelines for managing the last days of life in adults. 2006. The National Council for Hospices and
Specialist Palliative Care Services, London

26. Care During the Last Days and Hours of Life

Patients in the last days of life typically experience
extreme weakness and fatigue and become bedbound

“Death Rattle“ – noisy terminal respirations caused by the
presence of secretions in the airway (usually the upper
airway) in patients who are too weak to cough effectively

Hearing and touch

27. Care During the Last Days and Hours of Life

Patient decides whether to be cared for and to die in the
hospital, or at home


cardinal signs of death should be instructed to caregivers
Physician should establish a plan for who the family or
caregivers will contact when the patient is dying or has
died

Avoiding unnecessary admission

28. Care of the Imminently Dying Patient:
Medications
 Oral medications that are no longer necessary (e.g.,
laxatives, antibiotics) should be stopped.
 Medications that are needed to control ongoing
symptoms (e.g., pain, nausea, seizures) should be
given rectally or parenterally .
 When patients become anuric close to death,
continuous dosing may be discontinued in favor of
bolus dosing to prevent metabolite accumulation
and agitated delirium. - Weinstein, Arnold & Weissman, Fast Fact and
Concept #54: Opioid Infusions (www.eperc.mcw.edu)

29. Care of the Imminently Dying Patient:
Nutrition & Hydration




During the last days of life, patients tend naturally to
take in less and less food and fluid.
Hunger is rare in the last days of life.
Thirst occurs more commonly, but without relation to
dehydration, and can usually be controlled by simple
measures (e.g., moistening the lips, giving small sips
of fluids or small amounts of crushed ice to suck).
Enteral feeding should be stopped when the patient
can no longer swallow reliably.

30. Care of the Imminently Dying Patient:
Hydration

In most cases, parenteral (IV) fluids should not be given in
the last hours of life.

Allowing the patient to become slightly dehydrated may
prevent or ameliorate many otherwise distressing problems in
the last hours:
Consequence of IV Hydration
Symptoms
↑ Respiratory secretions
Cough
Pulmonary congestion
Sensations of choking & drowning
↑ Urine Output
Bedwetting, bedpans, catheters
↑ Gastrointestinal secretions
Vomiting
↑ Total body water
↑ Edema, ascites, pleural effusions
↓ Serum urea
↑ Awareness
↑Distress, ↓Pain threshold

31. Psychosocial Support of the Patient and the
Family

In addition to anxiolytics, supportive counseling, spiritual
counseling, and family support can help counter feelings
of anxiety

At the moment of the patient’s death:


shock and loss and be emotionally distraught
assimilate the event and be comforted

32. Support of the Patient &
His Family During the Agonal Period
The nearer the patient approaches death, the more he
reaches out towards life…
Touch is often important, sitting close to him, holding his
hand, staying near him even without words…
All of these things make the chasm between the living and
the dead less terrifying and lonely...
- Hackett & Weisman, 1962

33. TASKS OF THE MULTIDISCIPLINARY
PALLIATIVE CARE TEAM
1) To see the patient & the family through
- the physical & emotional stages of terminal illness
2) To ease their burden along the way
- to walk alongside, not to give orders from above
3) To be there
- when symptoms arise, when hard questions have
- to be faced, when fear & loneliness threaten

34. TASKS OF THE MULTIDISCIPLINARY
PALLIATIVE CARE TEAM
 To apply to the care of
the dying
the same high standards of
clinical analysis & decisionmaking as are demanded in the
care of patients expected to
get well

35. “Death is not extinguishing the light;
it is putting out the lamp because the Dawn has come.”
- Rabindranath Tagore