Rogers Textbook of Pediatric Intensive Care

154

Section IV: Ethical and Palliative Concerns in the Care of the Critically Ill

44. Ullrich CK, Mayer OH. Assessment and management of fatigue and dyspnea in pediatric palliative care. Pediatr Clin North Am . 2007;54(5):735-756. 45. de Graeff A, Dean M. Palliative sedation therapy in the last weeks of life: a literature review and recommendations for stan dards. J Palliat Med . 2007;10(1):67-85. 46. Rhee E, Lelkes E, Morrison WE. Palliative sedation. In: Kamat PP, Berkenbosch JW, eds. Sedation and Analgesia for the Pediat ric Intensivist: A Clinical Guide . Springer International Publish ing; 2021. 47. American Academy of Pediatrics Committee on Bioethics: guide lines on foregoing life-sustaining medical treatment. Pediatrics . 1994;93(3):532-536. 48. Truog RD, Cist AF, Brackett SE, et al. Recommendations for end-of-life care in the intensive care unit: The Ethics Commit tee of the Society of Critical Care Medicine. Crit Care Med . 2001;29(12):2332-2348. 49. Meyer EC, Ritholz MD, Burns JP, et al. Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ pri orities and recommendations. Pediatrics . 2006;117(3):649-657. 50. Feudtner C, Morrison W. The darkening veil of “do everything.” Arch Pediatr Adolesc Med . 2012;166(8):694-695. 51. Morrison W, Berkowitz I. Do not attempt resuscitation orders in pediatrics. Pediatr Clin North Am . 2007;54(5):757-771. 52. Burns JP, Edwards J, Johnson J, et al. Do-not-resuscitate order after 25 years. Crit Care Med . 2003;31(5):1543-1550. 53. Diem SJ, Lantos JD, Tulsky JA. Cardiopulmonary resuscita tion on television. Miracles and misinformation. N Engl J Med . 1996;334(24):1578-1582. 54. Schlairet MC, Cohen RW. Allow-natural-death (AND) or ders: legal, ethical, and practical considerations. HEC Forum . 2013;25(2):161-171. 55. Tulsky JA. Beyond advance directives: importance of communi cation skills at the end of life. JAMA . 2005;294(3):359-365. 56. Mark NM, Rayner SG, Lee NJ, Curtis JR. Global variability in withholding and withdrawal of life-sustaining treatment in the intensive care unit: a systematic review. Intensive Care Med . 2015;41(9):1572-1585. 57. Stack CG, Perring J. Pediatric DNAR orders in the perioperative period. Paediatr Anaesth . 2009;19(10):964-971. 58. Antommaria AH, Trotochaud K, Kinlaw K, et al. Policies on dona tion after cardiac death at children’s hospitals: a mixed-methods analysis of variation. JAMA . 2009;301(18):1902-1908. 59. Munson D. Withdrawal of mechanical ventilation in pediat ric and neonatal intensive care units. Pediatr Clin North Am . 2007;54(5):773-785. 60. Field MJ, Behrman RE, eds. When Children Die: Improving Pal liative and End-of-Life Care for Children and Their Families . National Academy Press; 2003. 61. Kirschbaum MS. Needs of parents of critically ill children. Di mens Crit Care Nurs . 1990;9(6):344-352. 62. Feudtner C, Walter JK, Faerber JA, et al. Good-parent be liefs of parents of seriously ill children. JAMA Pediatr . 2015;169(1):39-47. 63. October TW, Fisher KR, Feudtner C, Hinds PS. The parent per spective: “being a good parent” when making critical decisions in the PICU. Pediatr Crit Care Med . 2014;15(4):291-298. 64. Boyden JY, Hill DL, Carroll KW, et al. The association of per ceived social support with anxiety over time in parents of chil dren with serious illnesses. J Palliat Med . 2020;23(4):527-534. 65. Meert KL, Briller SH, Schim SM, et al. Examining the needs of bereaved parents in the pediatric intensive care unit: a qualitative study. Death Stud . 2009;33(8):712-740. 66. Meert KL, Thurston CS, Briller SH. The spiritual needs of par ents at the time of their child’s death in the pediatric intensive care unit and during bereavement: a qualitative study. Pediatr Crit Care Med . 2005;6(4):420-427. 67. 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 2004-2005. Crit Care Med . 2007;35(2):605-622. 68. Kon AA, Davidson JE, Morrison W, et al. Shared decision mak ing in ICUs: an American College of Critical Care Medicine and American Thoracic Society Policy Statement. Crit Care Med . 2016;44(1):188-201. 69. Madrigal VN, Carroll KW, Hexem KR, et al. Parental decision-making preferences in the pediatric intensive care unit. Crit Care Med . 2012;40(10):2876-2882. 70. Orkin J, Beaune L, Moore C, et al. Toward an understanding of advance care planning in children with medical complexity. Pediatrics . 2020;145(3):e20192241. 71. Morrison WE, Clark JD, Lewis-Newby M, Kon AA. Titrating clinician directiveness in serious pediatric illness. Pediatrics . 2018;142(suppl 3):S178-S186. 72. DeCourcey DD, Silverman M, Oladunjoye A, Wolfe J. Advance care planning and parent-reported end-of-life outcomes in chil dren, adolescents, and young adults with complex chronic condi tions. Crit Care Med . 2019;47(1):101-108. 73. Lanctot D, Morrison W, Kock KD, et al. Spiritual dimensions. In: Carter BS, Levetown M, Friebert SE, eds. Palliative Care for Infants, Children, and Adolescents: A Practical Handbook . 2nd ed. Johns Hopkins University Press; 2011:227-243. 74. Madrigal VN, Carroll KW, Faerber JA, et al. Parental sources of support and guidance when making difficult decisions in the pediatric intensive care unit. J Pediatr . 2016;169:221-226. 75. Madrigal VN, Kelly KP. Supporting family decision-making for a child who is seriously ill: creating synchrony and connection. Pediatrics . 2018;142(suppl 3):S170-S177. 76. Suttle M, Hall MW, Pollack MM, et al. Therapeutic alliance be tween bereaved parents and physicians in the PICU. Pediatr Crit Care Med . 2021;22(4):e243-e252. 77. 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(1):2-7. 78. Meert KL, Briller SH, Schim SM, et al. Exploring parents’ en vironmental needs at the time of a child’s death in the pediatric intensive care unit. Pediatr Crit Care Med . 2008;9(6):623-628. 79. Muriel AC, Case C, Sourkes BM. Children’s voices: the experi ence of patients and their siblings. In: Wolfe J, Hinds PS, Sourkes BM, eds. Textbook of Interdisciplinary Pediatric Palliative Care . Elsevier; 2011. 80. Rosenberg AR, Postier A, Osenga K, et al. Long-term psychoso cial outcomes among bereaved siblings of children with cancer. J Pain Symptom Manage . 2015;49(1):55-65. 81. Macdonald ME, Liben S, Carnevale FA, et al. Parental perspec tives on hospital staff members’ acts of kindness and commemo ration after a child’s death. Pediatrics . 2005;116(4):884-890. 82. Meert KL, Eggly S, Pollack M, et al. Parents’ perspectives regard ing a physician-parent conference after their child’s death in the pediatric intensive care unit. J Pediatr . 2007;151(1):50-55.e2. 83. Meert KL, Eggly S, Kavanaugh K, et al. Meaning making dur ing parent-physician bereavement meetings after a child’s death. Health Psychol . 2015;34(4):453-461. 84. Garstang J, Griffiths F, Sidebotham P. What do bereaved par ents want from professionals after the sudden death of their child: a systematic review of the literature. BMC Pediatr . 2014; 14:269. 85. Snaman JM, Kaye EC, Levine DR, et al. Empowering bereaved parents through the development of a comprehensive bereave ment program. J Pain Symptom Manage . 2017;53:767-775.

Copyright © 2023 Wolters Kluwer, Inc. Unauthorized reproduction of the content is prohibited. 86. Abib El Halal GM, Piva JP, Lago PM, et al. Parents’ perspectives on the deaths of their children in two Brazilian paediatric inten sive care units. Int J Palliat Nurs . 2013;19(10):495-502.

87. Meert KL, Templin TN, Michelson KN, et al. The bereaved par ent needs assessment: a new instrument to assess the needs of parents whose children died in the pediatric intensive care unit. Crit Care Med . 2012;40(11):3050-3057.

Made with FlippingBook Ebook Creator