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palliative care for children
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PEDIATRIC PALLIATIVE CARE
DR. LIZA C. MANALO, M.Sc.
PALLIATIVE CARE
Philippines
PHYSICAL SYMPTOMS
PSYCHOLOGICAL SYMPTOMS
SOCIAL NEEDSEXISTENTIAL OR
SPIRITUAL NEEDS
PALLIATIVE CARE
FOUR DOMAINS
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
DOMAINS OF QUALITY PALLIATIVE CARE
Domain 2: Physical Aspects of Care
Symptom Control
PAIN or DYSPNEA
WHO 3-step Analgesic Ladder Step 1: Non-opioids Step 2: Weak OpioidsStep 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
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.
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
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
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
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
Seizures
Diazepam Infants (1 mo – 2 yrs): 200 microgram/kg/24hr, 12 hrly divided dose, oral
400 microgram/kg, IV, titratedChildren 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
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
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
Domain 5: Spiritual, Religious and Existential
Aspects of Care
DEVELOPMENT OF DEATH CONCEPTS & SPIRITUALITY IN CHILDREN
>6-12 years old
Interventions: 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
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
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
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
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.
Advance Care Planning
Clarification of wishes regarding emergency and life-sustaining 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.
Any life-sustaining treatment…
Resuscitation (CPR)
Elective intubation, mechanical ventilation
Surgery
Dialysis, Hemofiltration
Blood transfusions, blood products
Diagnostic tests
Artificial nutrition, (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
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 proportionatemeans of preserving life, such as ordinary feeding, hydration, and
normal medical care
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
DOMAINS OF QUALITY PALLIATIVE CARE
Domain 7: Care of the Imminently Dying Patient
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.
“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.
Recognition: “DIAGNOSIS OF DYING”
Signs & Symptoms of Death Approaching
Profound tiredness and weakness
Reduced intake of food & fluids
Drowsy or reduced cognition
Gaunt appearance
Difficulty swallowing oral medication
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
Guidelines for managing the last days of life in adults. 2006. The National Council for Hospices and
Specialist Palliative Care Services, London
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
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 orcaregivers will contact when the patient is dying or has died
Avoiding unnecessary admission
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)
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.
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
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
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
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
TASKS OF THE MULTIDISCIPLINARY PALLIATIVE CARE TEAM
TASKS OF THE MULTIDISCIPLINARY
PALLIATIVE CARE TEAM
To apply to the care of the dying
the same high standards of clinical analysis & decision-
making as are demanded in the care of patients expected to
get well
“Death is not extinguishing the light;
it is putting out the lamp because the Dawn has come.”
- Rabindranath Tagore