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Symptom Control for Pediatric Patients

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Title: Symptom Control for Pediatric Patients


1
Symptom Control for Pediatric Patients
  • A guide to the management of pain, nausea, and
    other symptoms in seriously ill children, with a
    focus on the social and medical aspects of end-of
    life care.

Sponsored by -- The Jason Program creating a
community of care
2
(No Transcript)
3
Why Are You Here?
  • Be the caregiver you would want if you were in
    pain.

4
Outline
  • Social Aspects
  • Cure vs. Palliation
  • Accepting end-of-life care
  • Maintenance of active medical care
  • Managing death - Home or Hospital?
  • Medical Care
  • Pain Control
  • Other Common Symptoms
  • Nebulized Everything
  • Last Hours of Life

5
Cure vs. Palliation
  • Cure
  • -- fundamental hope is eradication of
  • disease to achieve longevity
  • -- assumes cure is worth a sacrifice
  • Palliation
  • -- fundamental hope is comfort
  • -- consequences of any intervention
    that relieves suffering
    are acceptable

6
A Better Viewpoint
Curative / Life-Prolonging Therapy
Presentation
Death
Relieve Suffering - Palliative Care
7
Accepting End-of-Life Care
  • Hope is never lost
  • MD must accurately understand the medical
    situation and estimate the chance for cure
  • With the family, level of support is determined
  • Previously established trust is helpful
  • Clear communication and truth are necessary
  • Shift towards increased family control
  • Identify goals
  • Situation is dynamic

8
Maintain Active Medical Care
  • Socially Important
  • Families need to know what is happening
  • Families need to plan and adapt
  • Feelings of security fostered
  • Fears of abandonment eliminated
  • Medically Important
  • Symptom relief necessary
  • Maintain dignity
  • Accomplish desired goals
  • PROactive rather than REactive

9
Death at Home vs. Hospital
  • Positive Home Death -- (Ida Martinson)
  • More control over daily activities
  • Medical care often better than in hospital
  • Home is a safe, comfortable place
  • Usually requires well functioning family
  • Staff support of the home death concept helpful
  • Positive Hospital Death --
  • Family does not need to take a medical role
  • Death at home may leave greater scars
  • For some, sibling issues are easier
  • Make hospital room feel like home

10
Medical Care Issues
  • Pain
  • Other Common Symptoms
  • Venous Access
  • Neonatal Pain
  • Terminal Care
  • Case Studies

11
Oncologic EmergenciesImmediate Intervention
Required
Common
Pain
Fever with Neutropenia or Splenectomy
Airway Compression
Spinal Cord Compression
Brain Herniation
Hyperleukocytosis
Less Common
12
Pain Management
  • Freedom From Pain A Matter of Rights?

  • T. Patrick Hill, M.A.

    Ca. Invest., 12 (4), 1994
  • Pain Isolates We are probably never more alone
    than when severe pain invades us.
  • Pain is Elusive Despite the fact that it is the
    result of biochemical processes, it is also ... a
    subjective experience, felt only within the
    confines of our individual minds.

13
A Matter of Attitude
  • Pain is unlike disease, and that to treat its
    symptoms clinically, physicians need above all to
    understand how the ravages of pain can reach
    beyond the body to the soul of the person,
    assaulting its very integrity.
  • There exists a principle on which rests the
    human right to be free of pain and the
    corresponding obligation of health-care
    professionals to honor it. All patients are
    vulnerable, but none is more vulnerable than the
    patient in severe pain. The measure of medicine
    in general and of a physician in particular is
    ultimately their respect for the patients right
    to be free of pain.

14
Barriers to Pain Control
  • ... the most pervasive and difficult to
    overcome relate to the fears among patients,
    families, and health professionals of opioid
    analgesics, which are the cornerstone of drug
    therapy for moderate to severe pain.
  • These fears include an exaggerated estimation of
    opioid addiction and tolerance, fear of opioid
    side effects -- most notably respiratory
    depression -- and ethical and regulatory concerns
    about using opioids.
  • Weissman, David E. Home Health Care Consultant
    Vol. 2, No. 5, Sept. 1995

15
Treatment Principles
  • Correctly Assess Degree and Cause of Pain
  • Consider Psychosocial Factors
  • Consider 24 hour Coverage
  • Children
  • Severe or Chronic Pain
  • Patient- Controlled Analgesia
  • Opioids Are Safe
  • Respiratory Depression Overestimated
  • Pharmacologic Dependence With Chronic Use
  • Never use a placebo

16
Pediatric Pain Assessment
  • Infant
  • HR, Resp, BP
  • fever, sweating
  • Child
  • Irritability, esp. paradoxical
  • Refusal to walk or use a painful limb
  • Functional changes (school, sports, etc.)
  • May be able to use pain scale
  • Adolescent
  • Generally accurate reporter
  • May be reluctant to participate

17
WHO 3-Step Ladder
Step 3 - Severe
Step 2 - Moderate
Morphine Hydromorphone Methadone Levorphanol Fenta
nyl
Codeine Hydrocodone Oxycodone Tramadol
Step 1 - Mild
Aspirin Acetaminophen NSAIDs
Always consider adding an adjuvant Rx
18
Level I Medications
  • Acetaminophen
  • 12 - 15 mg/kg, Q 4hr, PO or PR
  • NSAIDs
  • Ibuprofen
  • 10 mg/kg, max 40mg/kg/day, Q 6hr, PO
  • Ketorolac (variable efficacy)
  • 0.5 mg/kg IV/IM, 5-10 mg PO, Q 6hr
  • Cox 2 Inhibitors
  • Vioxx, oral solution, 0.5 mg/kg QD (effective)
  • Occasional sedation
  • Celebrex has better GI safety profile

19
Level II and III Medications
Pain Control Using Narcotics
20
Principles of Narcotic Dosing
  • The Right Dose is the Dose that Works
  • Pain and the Reticular Activating System
  • The respiratory depressant effect of opioid
    agonists can be demonstrated easily in volunteer
    studies. When the dose of morphine is titrated
    against a patients pain, however, clinically
    important respiratory depression does not occur.
    This appears to be because pain acts as a
    physiological antagonist to the central
    depression effects of morphine.
  • Wall, R.D., ed. Textbook of Pain. Churchill
    Livingstone
  • Naive Pts. vs. Tolerance

21
Enteral Narcotics
  • Codeine
  • 1 mg/kg, Q 2-4 hrs, PO
  • Ineffective for age 10-12 years
  • Hydrocodone (Lortab)
  • 0.1 mg/kg PO q 2-4 hours (very good for moderate
    pain)
  • Oxycodone 5 - 10 mg/ dose PO q 2-4 hours (Tylox)
  • Tramadol (Ultram)
  • 0.7 - 2.0 mg/kg/dose PO Q 4-6 hours (variable
    efficacy)
  • Morphine (the gold standard)
  • 0.3 mg/kg PO Q 2-4hr
  • Morphine SR (MS Contin)
  • 0.5 mg/kg, BID, PO (Do not crush)

22
Parenteral Narcotics
  • Morphine
  • 0.1 mg/kg IV bolus, Q 1-2hr
  • .05 mg/ kg/hr, CI - IV or SQ
  • Hydromorphone (Dilaudid)
  • Approximately 6 times stronger than morphine
  • Fentanyl
  • Approximately 10 times stronger than morphine
  • Wide dosing range
  • 1-2 mcg/kg IV slow push
  • 0.5-1.0 mcg/kg/hr, CI - IV or SQ
  • Total hourly dose as a transderm patch

23
Patient-Controlled Analgesia
  • Age 4 years (if able to play computer games)
  • Home or Hospital
  • Adequate observation

Medication Base Rate Bolus Dose
Lockout Max/Hr Morphine .03 mg/kg
Same 6-10 min .15 mg/kg Dilaudid
5 mcg/kg Same 6-10 min
25 mcg/kg Fentanyl 1 mcg/kg Same
6-10 min 4 mcg/kg
24
Equianalgesic Narcotic DosingSource McCaffery
M, Pasero C. PAIN Clinical Manual, 2nd
Edition, Harcort Health Sciences Website, 2000.
www.harcourthealth.com/PAIN/index.html
25
Opioid Side Effects
Common
Uncommon Constipation
Bad dreams / hallucinations Dry mouth
Dysphoria / delirium Nausea /
vomiting Myoclonus /
seizures Sedation
Pruritus / urticaria Sweats
Respiratory depression
Urinary retention
Demerol is not recommended due to its side
effects Addiction is NOT a side effect
26
CNS Excitation
  • Eliminate primary cause
  • Medications
  • Haldol (drug of choice)
  • Age 3-12 Agitation 0.01-0.03 mg/kg/day div QD -
    TID
  • Age 3-12 Psychosis 0.05-0.15 mg/kg/day div
    BID-TID
  • Age 12 Acute agitation 2-5 mg IM or 1-15 mg
    PO, Q1h PRN
  • Age 12 Psychosis same doses, IM Q 4-8 hr PO
    div BID-TID
  • Benzodiazepenes (may exacerbate delirium)
  • Dantrium - muscle spasms
  • 4-8 mg/kg/day, PO, div QID
  • 2.5 mg/kg by slow IV per dose, to effect
  • Narcotics are generally not indicated as these
    symptoms are usually uncomfortable, but not
    painful.

27
Myoclonus
  • Melatonin in treatment of non-epileptic myoclonus
    in children
  • Developmental Medicine Child Neurology 1999,
    41 255-259
  • Melatonin - pineal hormone regulates sleep
  • Absence ? seizures MLT is anticonvulsant
  • 1.25µ/kg IV MLT causes EEG slowing and sleep
  • Half-life
  • Case Reports
  • Three children with severe sleep disorders due to
    myoclonus
  • 1 had epilepsy, 2 without epilepsy

28
Case I
  • 15 month-old boy with holoprosencephaly spastic
    quadriplegia no epilepsy
  • Prolonged clusters of myoclonus only before sleep
  • Lasted several hours ? crying and exhaustion
  • No change in sensorium
  • Benzodiazepenes failed
  • 5 years of age2.5 mg oral FR MLT QHS
  • Myoclonus stopped after 2 days returned if MLT
    stopped
  • 8 years of age developed AM myoclonus 4mg CR
    MLT (replacing 5mg FR MLT) successful

29
Addiction
  • neurobehavioral syndrome with genetic
    environmental influences that results in
    psychological dependence on the use of substances
    for their psychic effects.
  • ME Board of Licensure in Medicine
  • Compulsive use
  • Loss of control over drugs
  • Loss of interest in pleasurable activities
  • Continued use of drugs in spite of harm
  • A rare outcome of pain management

30
Pseudoaddiction
  • Pseudoaddiction is a pattern of drug-seeking
    behavior of pain patients who are receiving
    inadequate pain management that can be mistaken
    for addiction.
  • Department of Professional Financial
    Regulation, Board of Licensure in Medicine, a
    joint chapter with the Board of Osteopathic
    Medicine, Chapter 11 Use of Controlled
    Substances for Treatment of Pain 

31
Tolerance
  • Reduced effectiveness of a given dose over time
  • Not clinically significant with chronic dosing
  • If dose is increasing, suspect disease progression

32
Physical dependence
  • A process of neuroadaptation
  • Abrupt withdrawal may ? abstinence syndrome
  • If dose reduction required, reduce by 50every
    23 days
  • Avoid antagonists

33
Substance Abusers
  • Can have real pain
  • Treat with compassion
  • Create protocols and contracts
  • Consider a consultation with pain or addiction
    specialists
  • More Options

34
Adjunctive Pain Treatments
  • Radiotherapy
  • External beam or brachytherapy
  • Bone Metastases
  • NSAIDs
  • Hemibody XRT
  • Radioisotopes
  • Anesthetic Procedures
  • Epidural anesthetics
  • Nerve Block
  • Neurosurgical Procedures
  • Neurolysis
  • Orthopedic Procedures
  • Stabilization of pathologic fractures

35
Complimentary Interventions
  • Acupuncture
  • Relaxation Therapy
  • Spiritual Assistance
  • Hypnosis / Biofeedback / Massage
  • Art Therapy

Summary
36
NIH Consensus Statement21
The introduction of acupuncture into the choice
of treatment modalities that are readily
available to the public is in its early stages.
Issues of training, licensure, and reimbursement
remain to be clarified. There is sufficient
evidence, however, of acupuncture's value to
expand its use into conventional medicine and to
encourage further studies of its physiology and
clinical value.
37
ShotBlocker
  • Thin plastic device designed to reduce the pain
    of minor injections

38
Use of the ShotBlocker
In my office, using the ShotBlocker on over 100
patients, ages ranging from 4-18 years, I have
noticed a significant reduction in the perceived
pain from my patients receiving minor injections
and immunizations. Although anecdotal, the
response has been striking. -- James Hunter,
MD, PhD
39
Scientific Results
Ordering Information Bionix Medical
Technologies Phone 1-800-551-7096Fax
800-455-5678Web www.bionix.com Pricing 25 per
box . 23.75100 per box
85.00
40
Other Common Symptoms
  • Neurologic Pain
  • Anxiety
  • Depression
  • Breathlessness
  • When All Else Fails
  • Nausea
  • Constipation

41
Narcotic Pruritus
  • Due to mast cell destabilization
  • Routine skin care
  • ? Reduce dose or change narcotic
  • Antihistamines
  • Claritin (or other non-sedating antihistamines)
  • 1- 6 years 5 mg PO QD
  • 6 years 10 mg PO QD
  • Benadryl
  • 1 mg/kg, IV or PO, Q 4-6 hr
  • H2 Blockers may be effective
  • Narcotic receptor blockade
  • Narcan, 0.005 mg/kg/hr, IV or SQ

42
Sedation
  • Distinguish from exhaustion due to pain
  • Tolerance develops within days
  • Treatment Stimulants
  • Ritalin, start _at_ 5-10 mg PO BID
  • Consider SR, 20 mg BID
  • Maximum ? 20 mg QID
  • Adderall is an alternative

43
Physiology of Nausea
  • CTZ
  • All transmitters

Cortical Anticipation
Vagal acetylcholine
  • GI Tract
  • Serotonin -- vagal
  • ACH - peristalsis
  • ? Dopamine
  • Other CNS
  • Vestibular ACH, histamine
  • ICP

44
Pharmacologic Management
  • Serotonin Blockage -- Wonder Drugs
  • Zofran (Ondansetron)
  • 0.15 mg/kg PO or IV Q 4-8 Hr
  • Oral forms Solution 4mg/5ml, Disintegrating
    tab 4, 8 mg, Tabs, 4, 8, 24 mg
  • Approved for chemo, post-op, gastroenteritis
  • No significant adverse effects
  • Less effective with delayed nausea
  • Kytril (Granisetron)
  • 1 mg PO QD or BID
  • Oral forms 1 mg tab, Solution, 2mg/10 ml

45
Pharmacologic Management
  • Dopamine Blockade
  • Phenothiazines (Compazine, Trilafon)
  • Butyrophenones (Droperidol, Haldol)
  • Benzimidazoles (Metaclopramide, Domperidone)
  • Modestly effective Sedation occasionally useful
  • Side effects common sedation, EPS, xerostomia,
    hypotension

46
Other Measures
  • Steroids
  • Most effective Rx for post-chemo nausea
  • Anxiolytics
  • Amnesia / Sedation / Relaxation
  • Propofol _at_ Sub-Hypnotic Doses
  • Canabinoids (THC)
  • Oral variable side effects, often unpleasant ?
    Inhaled
  • GI Agents
  • Prokinetic Rx
  • Proton Pump Inhibitor
  • Octreotide (Useful in GI obstruction)
  • Non-Pharmacologic Interventions
  • Avoid negative associations (taste, odors, emesis
    basin)
  • Pt. may prefer nausea to medication

47
Not Recommended
  • Meperidine
  • Normeperidine is a toxic metabolite
  • longer half-life (6 hours), no analgesia
  • if dosing q 3 h, normeperidine builds up
  • accumulates with renal failure
  • psychotomimetic effects, myoclonus, seizures
  • nausea
  • Propoxyphene (no proven efficacy)
  • Mixed Agonists/Antagonists (toxicity)

48
Federal Foolishness Marijuana
  • Jerome
    P. Kassirer, M.D.

  • NEJM, January 30, 1997
  • Thousands of patients with cancer, AIDS, and
    other diseases report they have obtained striking
    relief from these devastating symptoms by
    smoking marijuana....I believe that a federal
    policy that prohibits physicians from
    alleviating suffering by prescribing marijuana
    for seriously ill patients is misguided,
    heavy-handed, and inhumane.

49
Neurologic Pain
  • Caused by diseased neurons
  • Characterized as burning, tingling, electric
  • Medications
  • Amitryptiline, start at 25 mg PO HS and increase
    as tolerated to relief
  • Neurontin, 1800 - 3600 mg/day div TID
  • Narcotics are also useful
  • Methadone may an effective agent
  • NMDA Blockers - High dose dextromethorphan
  • Under investigation now _at_ 400 mg/day

50
Anxiety
  • Non-Pharmacologic
  • Compassionate Exploration of issues
  • Alternative medical approaches
  • Pharmacologic
  • Benzodiazepenes - Choose by half-life
  • Valium 0.1 mg/kg IV or PO
  • rectal gel - 0.2-0.5 mg/kg
  • Ativan 0.05 mg/kg, PO, IV, or SL
  • Versed 0.05 mg/kg IV 0.5 mg/kg PO

Long
Short
51
Depression
  • Risk Factors
  • Poorly controlled pain Physical impairment
  • Poor social supports Spiritual pain
  • Symptoms
  • Hopelessness Loss of self-esteem
  • Helplessness Suicidal ideations
  • Do you feel depressed most of the time?
  • Medication
  • Ritalin, 5-10 mg BID
  • SSRI

52
Breathlessness
  • Sense of drowning
  • Medical Management
  • Correct the underlying problem
  • Oxygen
  • Placebo vs. Cool Air?
  • Opioids
  • Anxiolytics
  • Non-Medical Management
  • Cool room with open window
  • Relaxation, hypnosis, minimize loneliness
  • Eliminate irritants

53
Constipation
  • Guaranteed to Work --
  • Miralax
  • PEG - Brings water into the bowel lumen
  • Tasteless in orange juice
  • Prevention
  • ½-1 cap (17 gm) per 8 ounces juice QD - BID
  • Cleanout
  • 1-1.5 gm/kg QD X 3 days

54
When All Else Fails
  • Butyrophenones
  • Droperidol
  • 0.025 - 0.05 mg/ kg IV Q 4-6 hr prn
  • Barbiturates
  • Pentobarbital
  • 2 - 8 mg/ kg IV,PO, PR, IM, Q 1-4 hr prn
  • Special Considerations

55
Barbiturates in the Care of The
Terminally Ill
  • Truog, Robert D., et. al. NEJM, Vol. 327, No. 23,
    1678-81
  • Barbiturates
  • Reliably produce sedation and unconsciousness
    (comfort)
  • Are used in the execution of prisoners by lethal
    injection
  • Ethical Considerations
  • The Principle of Double Effect --
    Distinction between intended effects and
    unintended although foreseen effects.

56
Barbiturates Are Justified
  • To relieve physical suffering when all reasonable
    alternatives have failed
  • To produce unconsciousness before terminal
    extubation
  • Produce deep sedation and unconsciousness as a
    means of relieving nonphysical suffering

57
Venous Access
  • Concept
  • Placement of a venous access device to allow
    for treatment without repeated veinipunctures.
  • Advantages
  • Minimizes pain
  • Nearly eliminates extravasation
  • Permits delivery of central TPN
  • Facilitates care in home and hospital settings
  • Disadvantages
  • Infection
  • Thrombosis

58
Options
Cook Broviac Port-a-Cath
PICC PAS Port
External VAD Cook Hickman Broviac PICC Walrus VAS-
Cath
SQ VAD Port-a-Cath Mediport PAS port
59
Pain in Neonates
  • Consensus Statement for the Preventionand
    Management of Pain in the Newborn
  • K. J. S. Anand, MBBS, DPhil and the
    International Evidence-Based Group for Neonatal
    Pain
  • Arch Pediatr Adolesc Med. 2001155173-180

60
Management of pain must be considered an
important component of the health care provided
to all neonates, regardless of their gestational
age or severity of illness.
Conclusion
61
Management of Pain
  • 1. Pain in newborns is often unrecognized and
    undertreated. Neonates do feel pain, and
    analgesia should be prescribed when indicated
    during their medical care.
  • 2. If a procedure is painful in adults, it should
    be considered painful in newborns, even if they
    are preterm.
  • 3. Newborns may experience a greater sensitivity
    to pain compared with older age groups and are
    more susceptible to the long-term effects of
    painful stimulation.
  • 4. Adequate treatment of pain may be associated
    with decreased clinical complications and
    decreased mortality of neonatal pain.

62
Continued
  • 5. Environmental, behavioral, and pharmacological
    interventions can prevent, reduce, or eliminate
    neonatal pain.
  • 6. Sedation does not provide pain relief and may
    mask the neonates response to pain.
  • 7. Health care professionals have the
    responsibility for assessment, prevention, and
    management of pain in neonates.
  • 8. Clinical units providing health care to
    newborns should develop written guidelines and
    protocols for the management

63
Pain Scales
64
Analgesic Medications
65
(No Transcript)
66
Nebulized Everything
  • Guaifenesin (glycerol guaiacolate)
  • The idea If the cough reflex is strong, loosen
    secretions with nebulized saline and
    guaifenesin.26
  • Opioids for Dyspnea
  • Lidocaine for cough hiccoughs

67
Managing secretions25
  • Saliva
  • produced in the oral cavity
  • under neurologic control
  • 3 pints/day
  • Sputum
  • mucous secretion produced by pulmonary epithelium
  • bronchorrhea is 100 ml/day production

68
Improve Mucociliary Clearance
  • Guaifenesin - creosote derivative
  • ? amount of upper airway fluid25
  • ? fluid surface tension adhesiveness25
  • ?except in chronic bronchitis34
  • efficacy enhanced by strong cough25
  • Safety
  • 100 mg/kg horse anesthesia
  • 150 mg/kg pig EEG changes of sedation
  • No side effects in chronic bronchitis _at_ 1600
    mg/D34
  • Our experience

69
Opioids for Dyspnea
  • Pharmacology
  • The individual relative bioavailabilities of
    inhaled morphine varied from 9 to 35, with a
    mean of 17.28 (50mg neb, 10mg po, 5 mg IV)
  • The systemic bioavailabilities of morphine
    were5 /- 3 and 24 /- 13 for the nebulized
    and oral routes respectively. 29(50mg neb, 10mg
    po, 5 mg IV)
  • Peak plasma morphine concentrations were
    achieved more rapidly after nebulized than oral
    morphine, occurring within 10 min in all
    subjects. 29

70
Efficacy
  • Pediatrics. 2002 Sep110(3)e38.
  • 20-kg boy with end stage cystic fibrosis
  • Dose 2.5 ? 12.5mg (0.125-0.625 mg/kg)
  • Venous pCO2 ?
  • Conclusions
  • a mild, beneficial effect on dyspnea, with
    minimal differences found between the lowest and
    highest doses.
  • More studies are needed to determine what, if
    any, the optimum dose of nebulized morphine is
    for children.

71
Nebulized Lidocaine
  • Pediatric Safety36
  • 6 severely asthmatic patients followed in the
    Pediatric Allergy and Immunology Section, Mayo
    Clinic, 1996
  • Dose 0.8 mg/kg/dose to 2.5 mg/kg/dose TID-QID
  • Mean duration of therapy 11.2 mos (7-16 mos)
  • Toxicity None
  • lidocaine may prove to be the first non-toxic,
    steroid alternative to patients with severe
    steroid-dependent asthma.

72
Pediatric Safety
  • New York Medical College37, 1997
  • In flexible bronchoscopy -
  • 20 pts., not intubated, no cardiac or hepatic
    disease
  • Dose 8 mg/kg or 4 mg/kg of nebulized 2
    lidocaine by face mask prior to bronchoscopy
    (randomized)
  • Safety serum lidocaine levels much
  • Conclusion Nebulized lidocaine in doses up to 8
    mg/kg appears to be safe and moderately effective
    as a topical anesthetic for flexible bronchoscopy
    in infants and children.

73
Efficacy
  • Hiccups38
  • 58 yr.-old man, 5 mos. Hiccups
  • Dose 3ml, 4 topical lidocaine, QD X 3 D
  • Resolved for 3 weeks, retreated successfully
  • Cough39,40
  • Type Intractable, Habit
  • Dx. Asthma, COPD
  • Efficacy Very effective
  • Breathlessness41 (terminal care in adults)
  • Ineffective

74
Protocol Variations
  • Bronchodilator pre-treatment
  • lidocaine can cause bronchospasm
  • Cardiac monitoring
  • lidocaine arrthymias
  • /- 1.0 ml 0.5 bupivicaine
  • NPO for 1-several hours after Rx
  • Loss of gag reflex

75
Last Days of Living - Social Aspects
  • Preparation
  • DNR
  • Letting Go
  • Physical Presence at Time of Death
  • Mechanism of Death
  • Autopsy
  • Follow-up

76
Last Days of Living - Medical Aspects
  • Weakness Fatigue
  • Dehydration
  • Respiratory Distress
  • Temperature Changes
  • Increased Secretions
  • Pain May Increase
  • Anxiety
  • Two Roads to Death

77
Two Roads to Death
Difficult
Confused
Tremulous
Restless
Hallucinations
Usual
Delirium
Myoclonic Jerks
Sleepy
Lethargic
Seizures
Obtunded
Comatose
Death
78
Thanks for listening
79
In Closing
  • --- Moldow, D.G. and Martinson,
    I.M., 1984

On December 17, 1978, Shawn, a 10 year old boy,
died of ... cancer. Shawns disease had reached
a stage where there was no hope for a lasting
cure.... Shawn chose to discontinue treatment and
to return home for the final days of his life.
Shortly before his death he stated in his own
words...
80
And I decided not to take the treatment, because
I had been through all that and it was hard. And
it wouldnt guarantee that I would live....days
dont count unless theyre good days....You just
have as much fun as you can, and make use of it,
its like each day is a gift.
Shawn died at home with his family.
81
Thanks for Listening
Gary Allegretta, M.D. Kennebunk Pediatric
Center Phone 207-985-6770 E-Mailmedicaldirector
_at_jasonprogram.org Fax (206) 338-2426 Web
www.jasonprogram.org
Break Time!
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Case I
  • Two day-old infant due for a circumcision

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Case II
  • Five year old boy, 25 kg, with relapsed
    neuroblastoma and bony metastases. He is
    receiving palliative chemotherapy. He has had
    slowly increasing pain, despite the use of
    Tylenol with codeine, scheduled Q 4H. He presents
    for a routine visit, where he is comfortable at
    rest. The parents carry him because he refuses to
    walk.

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Case III
  • 17 year old girl with advanced cystic fibrosis.
    She has severe thrombocytopenia, fatigue, and
    poor urinary output, but strongly wishes to
    attend her sisters wedding next month. She
    complains of no dyspnea, but her PCO2 is 70 and
    her PO2 is 60. How aggressive would you be?

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Case IV
  • 10 year old girl, 40 kg, with far advanced
    abdominal malignancy and intestinal obstruction.
    Receiving morphine at 100 mg/hr without relief.
    Her parents would like her to be awake for the
    arrival of a relative tomorrow, but dont want
    her to suffer.

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Case V
  • 15 year old girl with an advanced CNS tumor. She
    is becoming restless and has periods of
    confusion. The family wants to stay at home at
    all costs. Is this possible? How would you plan
    for the future?

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Case VI
  • 12 year old girl with Werdig-Hoffmans disease,
    which is a severe, progressive, congenital
    neuropathy. She lives in a nursing home, as her
    parents are incapable of caring for her at home.
    She carries a DNR order as well as an order not
    to transfer her to another institution for
    mechanical ventilation if needed. She often
    requires an external ventilator for survival when
    pulmonary infections or asthma occur, and has
    recently been dependant for the past 5 weeks due
    to recurrent infections and malnutrition. She is
    lucid and intelligent. Her mother, who is
    mentally unstable, has recently given sole
    responsibility of her care to her father, who has
    not visited in three years. The ventilator now
    partially fails. The father upholds the DNR and
    no transport orders, but wishes Grace to have IV
    fluids, pain control, and antibiotics, despite
    the patients desire to avoid the IV.
  • How would you manage this situation?

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