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Published on October 21, 2008

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Symptom Control for Pediatric Patients : 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? : Why Are You Here? Be the caregiver you would want if you were in pain. Outline : 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 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 Slide 6: Curative / Life-Prolonging Therapy Relieve Suffering - “Palliative” Care Presentation Death A Better Viewpoint Accepting End-of-Life Care : 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 : 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 Death at Home vs. Hospital : 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 : Medical Care Issues Pain Other Common Symptoms Venous Access Neonatal Pain Terminal Care Case Studies Slide 11: Oncologic EmergenciesImmediate Intervention Required Common Less Common Pain Fever with Neutropenia or Splenectomy Airway Compression Spinal Cord Compression Brain Herniation Hyperleukocytosis Pain Management : 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 : 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 : 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 : 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 : 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 : 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 : 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 : Level II and III Medications Pain Control Using Narcotics Principles of Narcotic Dosing : 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 : 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 : 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 : 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 DosingSource : McCaffery M, Pasero C. PAIN : Clinical Manual, 2nd Edition, Harcort Health Sciences Website, 2000. www.harcourthealth.com/PAIN/index.html : Equianalgesic Narcotic DosingSource : McCaffery M, Pasero C. PAIN : Clinical Manual, 2nd Edition, Harcort Health Sciences Website, 2000. www.harcourthealth.com/PAIN/index.html Slide 25: 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 : 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 : 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 < 1 hour Case Reports: Three children with severe sleep disorders due to myoclonus 1 had epilepsy, 2 without epilepsy Case I : 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 : 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 “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 : Tolerance Reduced effectiveness of a given dose over time Not clinically significant with chronic dosing If dose is increasing, suspect disease progression Physical dependence : 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 : 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 : 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 : Complimentary Interventions Acupuncture Relaxation Therapy Spiritual Assistance Hypnosis / Biofeedback / Massage Art Therapy Summary NIH Consensus Statement21 : 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.” ShotBlocker : ShotBlocker Thin plastic device designed to reduce the pain of minor injections Use of the ShotBlocker : 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 : 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 Other Common Symptoms : Other Common Symptoms Neurologic Pain Anxiety Depression Breathlessness When All Else Fails Nausea Constipation Narcotic Pruritus : 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 Sedation : 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 : 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 : 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 : 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 : 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 : 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 : 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 : 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 : 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 : 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 : 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 : 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 : 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 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 : 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 : 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 : 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 : 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. 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. : 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 : 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 : 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 Slide 63: Pain Scales Analgesic Medications : Analgesic Medications Nebulized Everything : 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 secretions25 : Managing secretions25 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 : 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 @ 1600 mg/D34 Our experience Opioids for Dyspnea : 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 Efficacy : 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 pCO2 < 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 : 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.” Pediatric Safety : 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 < 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 : 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 Protocol Variations : 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 : 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 : 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 : Two Paths to Death Thanks for listening : Thanks for listening In Closing : 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... Slide 80: 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 : Thanks for Listening Gary Allegretta, M.D. Kennebunk Pediatric Center Phone: 207-985-6770 E-Mail:medicaldirector@jasonprogram.org Fax: (206) 338-2426 Web: www.jasonprogram.org Break Time! Case I : Case I Two day-old infant due for a circumcision Case II : 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 : 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 PCO2 is 70 and her PO2 is 60. How “aggressive” would you be? Case IV : 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 : 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 : 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? Next Topic Beginning of Presentation

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