eTABLE 19 1 Medications Commonly Used for Pain and Distress at the End of Lifea Medication Routes Starting Dose Notes Opioids Morphine PO, SL, PR, SQ, IV 0 05–0 1 mg/kg every 3–4 h Infusion 0 01–0 03[.]
161.e1 eTABLE Medications Commonly Used for Pain and Distress at the End of Lifea 19.1 Medication Routes Starting Dose Notes Morphine PO, SL, PR, SQ, IV 0.05–0.1 mg/kg every 3–4 h Infusion: 0.01–0.03 mg/kg/h Renally excreted; causes histamine release Hydromorphone PO, IV, SQ, SL 0.015 mg/kg every 3–4 h Infusion: 0.003 mg/kg/h Fentanyl IV, SQ, buccal, nasal, patch 0.5-1 mcg/kg every 30 Infusion: µg/kg/h Transdermal patches available in 12.5, 25, 50, 75 and 100 µg/h Methadone PO, IV 0.05–0.1 mg/kg every 6–12 h initially, then decrease frequency Long acting and may accumulate; may be adjunctive for neuropathic pain via NMDA effects; prolongs QT interval; multiple drug interactions Midazolam PO, IV, SC 0.05–0.1 mg/kg every 2–4 h Infusion: 0.03–0.1 mg/kg/h Onset of action within minutes when given IV Lorazepam PO, IV, IM 0.025–0.1 mg/kg every 4–8 h Less hypotension than midazolam, slightly slower onset Diazepam PO, PR 0.05–0.2 mg/kg every 6-12 h IM and IV formulations available but rarely used due to pain/phlebitis; IV form may also be given PO or PR Opioids Benzodiazepines Other Sedatives and Adjuncts Ketamine PO, IM, IV 0.2–0.5 mg/kg/dose May be adjunctive for neuropathic pain via NMDA effects Gabapentin PO 10 mg/kg/day For neuropathic pain; increase daily until 30 mg/kg/ day, then reassess Amitriptyline PO mg For neuropathic pain; target dose 0.5–1 mg/kg/day a All doses are starting doses for patients not previously exposed and may need to be escalated to much higher levels IM, Intramuscular; IV, intravenous; NMDA, N-methyl-D-aspartate; PO, oral; PR, per rectum; SL, sublingual; SQ, subcutaneous 162 S E C T I O N I I I Pediatric Critical Care: Psychosocial and Societal Seizures Seizures can also occur at the end of life, for which benzodiazepines are a good first-line agent Levetiracetam or valproate are sometimes used as prophylaxis against seizures in patients at high risk (e.g., with brain tumors).58 Bowel Obstruction Bowel obstruction is a particularly difficult situation to manage Decompression with nasogastric drainage may improve symptoms Relieving constipation is often important Steroids may be beneficial if the obstruction is due to a mass Motility agents can be helpful, but they may also increase pain Octreotide (intravenous or subcutaneous) has been used to decrease intestinal secretions and may improve symptoms such as vomiting.60 Palliative surgery can be considered, but the degree and duration of benefits versus burdens should be carefully weighed.59 Palliative Sedation Rarely, symptoms may remain uncontrolled at the end of life despite maximal medical management In such circumstances, palliative sedation may be considered Palliative sedation is “the use of sedative medications to relieve intolerable suffering from refractory symptoms by a reduction in patient consciousness.”61,62 Benzodiazepines, barbiturates, dexmedetomidine, or propofol can be used Additionally, propofol has advantageous effects against nausea, pruritus, seizures, and myoclonus, while dexmedetomidine is useful because it does not cause respiratory depression Sedation to unconsciousness can be justified when symptoms cannot be managed by other means and death is considered imminent (e.g., within hours to days) Protocols have been published that guide the implementation of palliative sedation, which include prerequisite consensus by an interdisciplinary team that symptoms are truly refractory and that the patient is imminently dying of a terminal illness.63 Care of Family and Staff after a Child’s Death The death of a child is a tragic event that affects all who are touched by it Grief support is a crucial part of the ongoing care that bereaved families need after their child dies; these services are typically provided by referral to a community- or hospitalbased bereavement program Such programs provide ongoing support and frequent assessments to identify complicated grief when it occurs Bereaved families of chronically ill children often describe a sense of “double loss,” both for their child and for their medical team who cared for them over the course of months or years.64 Staff members in the ICU are also impacted by the death of a child and are at risk for compassion fatigue and burnout due to repeated exposure to secondary trauma.65 The American College of Critical Care Medicine Task Force guidelines for support of the patient and family in the ICU setting recommend structured support mechanisms for staff, such as debriefing sessions,66 which can be facilitated by social work, spiritual care, or palliative care For some individuals, these sessions provide a safe forum to discuss their feelings about a particular patient or experience, which can help process grief Others may benefit from developing personalized ways to process stress or grief, which can include any number of activities, such as exercise, reflective writing, outdoor activities, engaging in a spiritual practice, or meeting with a counselor or therapist regularly In addition, some staff members choose to send condolence letters or attend memorial services for children as a way to further support the family, honor the memory of the child, and process their own grief Key References American Academy of Pediatrics Committee on Bioethics Guidelines on foregoing life-sustaining medical treatment Pediatrics 1994;93:532-536 Boss R, Nelson J, Weissman D, et al Integrating palliative care into the PICU: a report from the improving palliative care in the ICU Advisory Board Pediatr Crit Care Med 2014;15:762-767 Clark JD, Dudzinski DM The culture of dysthanasia: attempting CPR in terminally ill children Pediatrics 2013;131:572-580 Dahlin CM, ed The National Consensus Project for Quality Palliative Care: Clinical Practice Guidelines for Quality Palliative Care 3rd ed Pittsburgh, PA: The National Consensus Project for Quality Palliative Care; 2013 Feudtner C, Morrison W The darkening veil of “do everything.” Arch Pediatr Adolesc Med 2012;166:694-695 Guerrero AD, Chen J, Inkelas M, et al Racial and ethnic disparities in pediatric experiences of family-centered care Med Care 2010;48:388393 Hurd CJ, Curtis JR The intensive care unit family conference Teaching a critical intensive care unit procedure Ann Am Thorac Soc 2015; 12:469-471 Kon AA The shared decision-making continuum JAMA 2010;304:903904 Meyer EC, Ritholz MD, Burns JP, et al Improving the quality of end-oflife care in the pediatric intensive care unit: parents’ priorities and recommendations Pediatrics 2006;117:649-657 Munson D Withdrawal of mechanical ventilation in pediatric and neonatal intensive care units Pediatr Clin North Am 2007;54:773-785 Truog RD, Cist AF, Brackett SE, et al Recommendations for end-of-life care in the intensive care unit: the Ethics Committee of the Society of Critical Care Medicine Crit Care Med 2001;29:2332-2348 Van Cleave AC, Roosen-Runge MU, Miller AB, et al Quality of communication in interpreted versus noninterpreted PICU family meetings Crit Care Med 2014;42:1507-1517 The full reference list for this chapter is available at ExpertConsult.com e1 References Burns JP, Sellers DE, Meyer EC, et al Epidemiology of death in the PICU at five US teaching hospitals Crit Care Med 2014;42:2101-2108 Davies D, Hartfield D, Wren T Children who “grow up” in hospital: inpatient stays of six months or longer Paediatr Child Health 2014; 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2013 Curtis JR, White DB Practical guidance for evidence-based ICU family conferences Chest 2008;134:835-843 10 Cypress BS Family conference in the intensive care unit: a systematic review Dimens Crit Care Nurs 2011;30:246-255 11 Meyer EC, Ritholz MD, Burns JP, et al Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations Pediatrics 2006;117:649-657 12 Hickey M What are the needs of families of critically ill patients? 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Intensive Care Med 2009;35:2051-2059 18 Curtis JR, Engelberg RA, Wenrich MD, et al Missed opportunities during family conferences about end-of-life care in the intensive care unit Am J Respir Crit Care Med 2005;171:844-849 19 Meert KL, Eggly S, Pollack M, et al Parents’ perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit Pediatr Crit Care Med 2008;9:2-7 20 Baker DW, Hayes R, Fortier JP Interpreter use and satisfaction with interpersonal aspects of care for Spanish-speaking patients Med Care 1998;36:1461-1470 21 Carrasquillo O, Orav EJ, Brennan TA, et al Impact of language barriers on patient satisfaction in an emergency department J Gen Intern Med 1999;14:82-87 22 Guerrero AD, Chen J, Inkelas M, et al Racial and ethnic disparities in pediatric experiences of family-centered care Med Care 2010; 48:388-393 23 Morales LS, Cunningham WE, Brown JA, et al Are Latinos less satisfied with communication by health care providers? J Gen Intern Med 1999;14:409-417 24 Mosen DM, Carlson MJ, Morales LS, Hanes PP Satisfaction with provider communication among Spanish-speaking Medicaid enrollees Ambul Pediatr 2004;4:500-504 25 Van Cleave AC, Roosen-Runge MU, Miller AB, et al Quality of communication in interpreted versus noninterpreted PICU family meetings Crit Care Med 2014;42:1507-1517 26 Hurd CJ, Curtis JR The intensive care unit family conference Teaching a critical intensive care unit procedure Ann Am Thorac Soc 2015;12:469-471 27 Marcus JD, Mott FE Difficult conversations: from diagnosis to death Ochsner J 2014;14:712-717 28 Baile WF, Buckman R, Lenzi R, et al SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer Oncologist 2000;5:302-311 29 Orioles A, Miller VA, Kersun LS, et al “To be a phenomenal doctor you have to be the whole package”: physicians’ interpersonal behaviors during difficult conversations in pediatrics J Palliat Med 2013;16:929933 30 Mack JW, Wolfe J, Cook EF, et al Hope and prognostic disclosure J Clin Oncol 2007;25:5636-5642 31 Meyer EC July 7, 2014 On Being Present, not Perfect http://vector childrenshospital.org/2014/07/communication-and-the-patient-experience-on-being-present-not-perfect/ 32 Burns JP, Edwards J, Johnson J, et al Do-not-resuscitate order after 25 years Crit Care Med 2003;31:1543-1550 33 Morrison W, Berkowitz I Do not attempt resuscitation orders in pediatrics Pediatr Clin North Am 2007;54:757-771, xi-xii 34 Schlairet MC, Cohen RW Allow-natural-death (AND) orders: legal, ethical, and practical considerations HEC Forum 2013;25:161171 35 Venneman SS, Narnor-Harris P, Perish M, et al “Allow natural death” versus “do not resuscitate”: three words that can change a life J Med Ethics 2008;34:2-6 36 Diem SJ, Lantos JD, Tulsky JA Cardiopulmonary resuscitation on television Miracles and misinformation N Engl J Med 1996;334: 1578-1582 37 Barnato AE, Arnold RM The effect of emotion and physician communication behaviors on surrogates’ life-sustaining treatment decisions: a randomized simulation experiment Crit Care Med 2013; 41:1686-1691 38 Halpern SD, Loewenstein G, Volpp KG, et al Default options in advance directives influence how patients set goals for end-of-life care Health Aff 2013;32:408-417 39 Halpern SD, Ubel PA, Asch DA Harnessing the power of default options to improve health care N Engl J Med 2007;357:1340-1344 40 Feudtner C, Morrison W The darkening veil of “do everything.” Arch Pediatr Adolesc Med 2012;166:694-695 41 Clark JD, Dudzinski DM The culture of dysthanasia: attempting CPR in terminally ill children Pediatrics 2013;131:572-580 42 Kon AA The shared decision-making continuum JAMA 2010; 304:903-904 43 Connor SR U.S hospice benefits J Pain Symptom Manage 2009;38: 105-109 44 Hoyer T A history of the Medicare hospice benefit Hosp J 1998;13:61-69 45 Feudtner C, Feinstein JA, Satchell M, et al Shifting place of death among children with complex chronic conditions in the United States, 1989-2003 JAMA 2007;297:2725-2732 46 Feudtner C Epidemiology and the care of children with complex conditions In: Wolfe J, Hinds P, Sourkes B, eds Textbook of Interdisciplinary Pediatric Palliative Care Philadelphia, PA: Elsevier; 2011:7-18 47 Ullrich CK, Mayer OH Assessment and management of fatigue and dyspnea in pediatric palliative care Pediatr Clin North Am 2007;54:735-756 48 Munson D Withdrawal of mechanical ventilation in pediatric and neonatal intensive care units Pediatr Clin North Am 2007;54:773785 e2 49 Truog RD, Cist AF, Brackett SE, et al Recommendations for endof-life care in the intensive care unit: the Ethics Committee of the Society of Critical Care Medicine Crit Care Med 2001;29:2332-2348 50 American Academy of Pediatrics Committee on Bioethics Guidelines on foregoing life-sustaining medical treatment Pediatrics 1994;93:532-536 51 Ragsdale L, Zhong W, Morrison W, et al Pediatric exposure to opioid and sedation medications during terminal hospitalizations in the United States, 2007-2011 J Pediatr 2015;166:587-593 52 Friedrichsdorf SJ, Kang TI The management of pain in children with life-limiting illnesses Pediatr Clin North Am 2007;54:645-672 53 Zernikow B, Michel E, Craig F, et al Pediatric palliative care: use of opioids for the management of pain Paediatr Drugs 2009;11:129-151 54 Nalamachu SR Opioid rotation in clinical practice Adv Ther 2012;29:849-863 55 Williams DG, Patel A, Howard RF Pharmacogenetics of codeine metabolism in an urban population of children and its implications for analgesic reliability Br J Anaesth 2002;89:839-845 56 Thrane S Effectiveness of integrative modalities for pain and anxiety in children and adolescents with cancer: a systematic review J Pediatr Oncol Nurs 2013;30:320-332 57 Boyden JY, Connor SR, Otolorin L, et al Nebulized medications for the treatment of dyspnea: a literature review J Aerosol Med Pulm Drug Deliv 2015;28:1-19 58 Wusthoff CJ, Shellhaas RA, Licht DJ Management of common neurologic symptoms in pediatric palliative care: seizures, agitation, and spasticity Pediatr Clin North Am 2007;54:709-733 59 Santucci G, Mack JW Common gastrointestinal symptoms in pediatric palliative care: nausea, vomiting, constipation, anorexia, cachexia Pediatr Clin North Am 2007;54:673-689 60 Currow DC, Quinn S, Agar M, et al Double-blind, placebo-controlled, randomized trial of octreotide in malignant bowel obstruction J Pain Symptom Manage 2015;49:814-821 61 Beller EM, van Driel ML, McGregor L, et al Palliative pharmacological sedation for terminally ill adults Cochrane Database Syst Rev 2015;(1):Cd010206 62 de Graeff A, Dean M Palliative sedation therapy in the last weeks of life: a literature review and recommendations for standards J Palliat Med 2007;10:67-85 63 Gurschick L, Mayer DK, Hanson LC Palliative sedation: an analysis of international guidelines and position statements Am J Hosp Palliat Care 2015;32(6):660-671 electronically published May 2014 64 Contro N, Kreicbergs U, Reichard W, Sourkes B Anticipatory grief and bereavement In: Wolfe J, Hinds P, Sourkes B, eds Textbook of Interdisciplinary Pediatric Palliative Care Philadelphia, PA: Elsevier; 2011:41-54 65 Robins PM, Meltzer L, Zelikovsky N The experience of secondary traumatic stress upon care providers working within a children’s hospital J Pediatr Nurs 2009;24:270-279 66 Davidson JE, Powers K, Hedayat KM, et al Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 20042005 Crit Care Med 2007;35:605-622 e3 Abstract: Pediatric intensivists must develop a high level of competency in core palliative care skills, such as communication, shared decision-making, appropriate limitation of interventions, compassionate extubation, and symptom management Intensivists must also know when to consult a palliative care team for secondary palliative care support, such as in the case of complex decision-making, advanced symptom management, need for enhanced family support, or transitioning a patient to hospice Key Words: palliative care, communication, shared decisionmaking, compassionate extubation, symptom management, grief support, hospice ... intensive care unit: the Ethics Committee of the Society of Critical Care Medicine Crit Care Med 2001;29:2332-2348 50 American Academy of Pediatrics Committee on Bioethics Guidelines on foregoing... child, and process their own grief Key References American Academy of Pediatrics Committee on Bioethics Guidelines on foregoing life-sustaining medical treatment Pediatrics 1994;93:532-536 Boss... Project for Quality Palliative Care; 2013 Feudtner C, Morrison W The darkening veil of “do everything.” Arch Pediatr Adolesc Med 2012;166:694-695 Guerrero AD, Chen J, Inkelas M, et al Racial and