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Support  I I I Support I I I Presentation Transcript

  • 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
  •  
  • Why Are You Here?
    • Be the caregiver you would want if you were in pain.
  • 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
  • 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
  • Curative / Life-Prolonging Therapy Relieve Suffering - “Palliative” Care Presentation Death A Better Viewpoint
  • 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
  • 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
      • PRO active rather than RE active
  • 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
  • Medical Care Issues
    • Pain
    • Other Common Symptoms
    • Venous Access
    • Neonatal Pain
    • Terminal Care
    • Case Studies
  • Oncologic Emergencies Immediate Intervention Required Common Less Common Pain Fever with Neutropenia or Splenectomy Airway Compression Spinal Cord Compression Brain Herniation Hyperleukocytosis
  • 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.”
  • 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 patient’s right to be free of pain.”
  • 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
  • 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
  • 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
  • WHO 3-Step Ladder Step 1 - Mild Step 2 - Moderate Step 3 - Severe Aspirin Acetaminophen NSAIDs Codeine Hydrocodone Oxycodone Tramadol Morphine Hydromorphone Methadone Levorphanol Fentanyl Always consider adding an adjuvant Rx
  • 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
  • Level II and III Medications Pain Control Using Narcotics
  • 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 patient’s 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
  • 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)
  • 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
  • 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
  • Equianalgesic Narcotic Dosing Source : McCaffery M, Pasero C. PAIN : Clinical Manual, 2nd Edition, Harcort Health Sciences Website, 2000. www.harcourthealth.com/PAIN/index.html Oral/Rectal Dose (mg) Analgesic Parenteral Dose (mg) 3 Morphine 1 20 Codeine 12 3 Hydrocodone -- 0.75 Hydromorphone 0.15-(0.3 w/ PCA) 2 Oxycodone -- 2 Methadone 1 25 mcg/hr Fentanyl Patch = 1 mg/hr IV MSO 4 -- Fentanyl 10-20 mcg 30 Meperidine 7.5
  • Common Uncommon Constipation Bad dreams / hallucinations Dry mouth Dysphoria / delirium Nausea / vomiting Myoclonus / seizures Sedation Pruritus / urticaria Sweats Respiratory depression Urinary retention Opioid Side Effects Demerol is not recommended due to its side effects Addiction is NOT a side effect
  • 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.
  • 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
      • 1.25 µ/kg IV MLT causes EEG slowing and sleep
      • Half-life < 1 hour
    • Case Reports:
      • Three children with severe sleep disorders due to myoclonus
      • 1 had epilepsy, 2 without epilepsy
  • 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 age:2.5 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
  • 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
  • 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  
  • Tolerance
    • Reduced effectiveness of a given dose over time
    • Not clinically significant with chronic dosing
    • If dose is increasing, suspect disease progression
  • Physical dependence
    • A process of neuroadaptation
    • Abrupt withdrawal may  abstinence syndrome
    • If dose reduction required, reduce by 50% every 2–3 days
    • Avoid antagonists
  • Substance Abusers
    • Can have real pain
    • Treat with compassion
    • Create protocols and contracts
    • Consider a consultation with pain or addiction specialists
    • More Options
  • 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
  • Complimentary Interventions
    • Acupuncture
    • Relaxation Therapy
    • Spiritual Assistance
    • Hypnosis / Biofeedback / Massage
    • Art Therapy
    Summary
  • NIH Consensus Statement 21 “ 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.”
  • ShotBlocker
    • Thin plastic device designed to reduce the pain of minor injections
  • 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
  • Scientific Results Ordering Information Bionix Medical Technologies Phone: 1-800-551-7096 Fax: 800-455-5678 Web: www.bionix.com Pricing 25 per box ……………………………. $23.75 100 per box ………………………… $85.00
  • Other Common Symptoms
    • Neurologic Pain
    • Anxiety
    • Depression
    • Breathlessness
    • When All Else Fails
    • Nausea
    • Constipation
  • 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
      • H 2 Blockers may be effective
    • Narcotic receptor blockade
      • Narcan, 0.005 mg/kg/hr, IV or SQ
  • Sedation
    • Distinguish from exhaustion due to pain
    • Tolerance develops within days
    • Treatment – Stimulants
      • Ritalin, start @ 5-10 mg PO BID
      • Consider SR, 20 mg BID
      • Maximum  20 mg QID
      • Adderall is an alternative
  • Physiology of Nausea
    • CTZ
    • All transmitters
    Cortical Anticipation
    • GI Tract
    • Serotonin -- vagal
    • ACH - peristalsis
    • ? Dopamine
    • Other CNS
    • Vestibular ACH, histamine
    • ICP
    Vagal • acetylcholine
  • 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
  • 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
  • Other Measures
    • Steroids
      • Most effective Rx for post-chemo nausea
    • Anxiolytics
      • Amnesia / Sedation / Relaxation
    • Propofol @ 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
  • 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)
  • 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.”
  • 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 @ ~ 400 mg/day
  • 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
  • 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
  • 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
  • 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
  • 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
  • Barbiturates in the Care of The Terminally Ill
    • 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.
    • Truog, Robert D., et. al. NEJM, Vol. 327, No. 23, 1678-81
  • 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
  • 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
  • Options PICC PAS Port Cook Broviac Port-a-Cath
    • External VAD
      • Cook
      • Hickman
      • Broviac
      • PICC
      • Walrus
      • VAS-Cath
    SQ VAD Port-a-Cath Mediport PAS port
  • Pain in Neonates
    • Consensus Statement for the Prevention and 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. 2001;155:173-180
  • 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
  • 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.
  • 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 neonate’s 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
  • Pain Scales
  • Analgesic Medications
  •  
  • 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
  • Managing secretions 25
    • Saliva
      • produced in the oral cavity
      • under neurologic control
      • 3 pints/day
    • Sputum
      • mucous secretion produced by pulmonary epithelium
      • <100 ml/day
      • bronchorrhea is > 100 ml/day production
  • Improve Mucociliary Clearance
    • Guaifenesin - creosote derivative
      •  amount of upper airway fluid 25
      •  fluid surface tension & adhesiveness 25
        • ?except in chronic bronchitis 34
      • efficacy enhanced by strong cough 25
    • Safety
      • 100 mg/kg = horse anesthesia
      • 150 mg/kg = pig EEG changes of sedation
      • No side effects in chronic bronchitis @ 1600 mg/D 34
    • Our experience
  • 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 were 5 +/- 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
  • Efficacy
    • Pediatrics . 2002 Sep;110(3):e38.
    • 20-kg boy with end stage cystic fibrosis
    • Dose: 2.5  12.5mg (0.125-0.625 mg/kg)
    • Venous pCO 2  < 4mm; 9mm at 12.5 mg dose
    • 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.”
  • Nebulized Lidocaine
    • Pediatric Safety 36
      • 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.”
  • Pediatric Safety
    • New York Medical College 37 , 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 < toxic
      • 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.”
  • Efficacy
    • Hiccups 38
      • 58 yr.-old man, 5 mos. Hiccups
      • Dose: 3ml, 4% topical lidocaine, QD X 3 D
      • Resolved for 3 weeks, retreated successfully
    • Cough 39,40
      • Type: Intractable, Habit
      • Dx.: Asthma, COPD
      • Efficacy: Very effective
    • Breathlessness 41 (terminal care in adults)
      • Ineffective
  • 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
  • Last Days of Living - Social Aspects
    • Preparation
    • DNR
    • Letting Go
    • Physical Presence at Time of Death
    • Mechanism of Death
    • Autopsy
    • Follow-up
  • Last Days of Living - Medical Aspects
    • Weakness & Fatigue
    • Dehydration
    • Respiratory Distress
    • Temperature Changes
    • Increased Secretions
    • Pain May Increase
    • Anxiety
    • Two Roads to Death
  • Two Paths to Death Usual Difficult Sleepy Lethargic Obtunded Comatose Death Restless Confused Tremulous Hallucinations Delirium Seizures Myoclonic Jerks
  • Thanks for listening
  • In Closing
        • --- Moldow, D.G. and Martinson, I.M., 1984
      • “ On December 17, 1978, Shawn, a 10 year old boy, died of ... cancer. Shawn’s 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...
    • And I decided not to take the treatment, because I had been through all that and it was hard. And it wouldn’t guarantee that I would live....days don’t count unless they’re good days....You just have as much fun as you can, and make use of it, it’s like each day is a gift .
      • Shawn died at home with his family.”
  • Thanks for Listening Gary Allegretta, M.D. Kennebunk Pediatric Center Phone: 207-985-6770 E-Mail: [email_address] Fax: (206) 338-2426 Web: www.jasonprogram.org Break Time!
  • Case I
    • Two day-old infant due for a circumcision
  • 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.
  • 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 sister’s wedding next month. She complains of no dyspnea, but her PCO 2 is 70 and her PO 2 is 60. How “aggressive” would you be?
  • 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 don’t want her to suffer.
  • 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?
  • Case VI
    • 12 year old girl with Werdig-Hoffman’s 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 patient’s desire to avoid the IV.
    • How would you manage this situation?
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