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Advance Care Planning

  • Allison Caldwell
  • Melody J. Cunningham
  • Justin N. BakerEmail author
Chapter

Abstract

Advance care planning is the process by which a patient and family, in consultation with healthcare providers, make decisions about current and future health care [2]. It is regarded as the gold standard for all patients facing serious illness, including the pediatric population [5]. While historically advance care planning programs and research efforts centered on adult patients, and a predominantly geriatric population [5], these efforts have expanded to incorporate children and young adults, in concordance with the growth of pediatric palliative care programs [6]. Similarly, the model for advance care planning, which in its conception focused largely on completion of advance directives, now involves discussion of goals of care, patient and family values, systems of belief, and patient prognosis as they inform patient care and medical intervention [7]. The process of advance care planning occurs as an ongoing conversation, rather than a discrete or finite decision, and adapts alongside the trajectory of illness, in synchrony with patient and family goals. The American Academy of Pediatrics (AAP) Policy Statement on Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations states that the palliative care clinician should “facilitate clear, compassionate, and forthright discussions with patients and families about therapeutic goals and concerns, the benefits and burdens of specific therapies, and the value of advance care planning [8].” The policy statement emphasizes the importance of engaging in advance care planning over time, as an illness and treatment course evolves, and at least annually in the care of a child with a chronic, complex illness [8]. Advance care planning should begin early in the course of illness; should be shared among the patient, family, and healthcare provider; and should occur as a structured process [9, 10].

Keywords

Advance care planning End life care Decision-making Pediatrics Palliative care Life-sustaining treatment Children Young adults Cancer Patient family 

References

  1. 1.
    Klick JC, Hauer J. Pediatric palliative care. Curr Probl Pediatr Adolesc Health Care. 2010;40(6):120–51.PubMedCrossRefGoogle Scholar
  2. 2.
    Singer P, Robertson G, Roy DJ. Bioethics for clinicians: 6. Advance care planning. Can Med Assoc J. 1996;155(12)Google Scholar
  3. 3.
    Hill DL, et al. Regoaling: a conceptual model of how parents of children with serious illness change medical care goals. BMC Palliat Care. 2014;13(1):9.PubMedPubMedCentralCrossRefGoogle Scholar
  4. 4.
    Edmonds KP, et al. Establishing goals of care at any stage of illness: the PERSON mnemonic. J Palliat Med. 2014;17(10):1087.PubMedCrossRefPubMedCentralGoogle Scholar
  5. 5.
    Lotz JD, et al. Pediatric advance care planning: a systematic review. Pediatrics. 2013;131(3):e873–80.PubMedCrossRefPubMedCentralGoogle Scholar
  6. 6.
    Hammes BJ, et al. Pediatric advanced care planning. J Palliat Med. 2005;8(4).Google Scholar
  7. 7.
    Houben CH, et al. Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc. 2014;15(7):477–89.PubMedCrossRefPubMedCentralGoogle Scholar
  8. 8.
    Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics. 2013;132(5):966–72.Google Scholar
  9. 9.
    <Is It Safe- Talking to Teens with HIV:AIDS about death and dying.pdf>. Google Scholar
  10. 10.
    <When Children Die Book.pdf>. Google Scholar
  11. 11.
    <Suffering at the EOL- Recognizing an Ethical Duty to Palliate.pdf>. Google Scholar
  12. 12.
    <informed consent, parental permission, and assent in pediatric practice.pdf>. Google Scholar
  13. 13.
    <Ethics for the Pediatrician.pdf>. Google Scholar
  14. 14.
    Baker JN, et al. Integration of palliative care practices into the ongoing care of children with cancer: individualized care planning and coordination. Pediatr Clin N Am. 2008;55(1):223–50, xii.CrossRefGoogle Scholar
  15. 15.
    Kane JR, Hellsten MB, Coldsmith A. Human suffering: the need for relationship-based research in pediatric end-of-life care. J Pediatr Oncol Nurs. 2004;21(3):180–5.PubMedCrossRefPubMedCentralGoogle Scholar
  16. 16.
    Heinze KE, Nolan MT. Parental decision making for children with cancer at the end of life: a meta-ethnography. J Pediatr Oncol Nurs. 2012;29(6):337–45.PubMedCrossRefPubMedCentralGoogle Scholar
  17. 17.
    Meyer EC, et al. Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations. Pediatrics. 2006;117(3):649–57.PubMedCrossRefPubMedCentralGoogle Scholar
  18. 18.
    <Cancer Care During the Last Phase of Life.pdf>. Google Scholar
  19. 19.
    Sanderson A, Hall AM, Wolfe J. Advance care discussions: pediatric clinician preparedness and practices. J Pain Symptom Manag. 2016;51(3):520–8.CrossRefGoogle Scholar
  20. 20.
    Truog RD, et al. Recommendations for end-of-life care in the intensive care unit: a consensus statement by the American College [corrected] of Critical Care Medicine. Crit Care Med. 2008;36(3):953–63.PubMedCrossRefPubMedCentralGoogle Scholar
  21. 21.
    Levetown M, American Academy of Pediatrics Committee on Bioethics. Communicating with children and families: from everyday interactions to skill in conveying distressing information. Pediatrics. 2008;121(5):e1441–60.CrossRefGoogle Scholar
  22. 22.
    Day E, et al. Current understanding of decision-making in adolescents with cancer: a narrative systematic review. Palliat Med. 2016;30(10):920–34.PubMedPubMedCentralCrossRefGoogle Scholar
  23. 23.
    Hinds PS, et al. EOL decision making by adolescents, parents, and healthcare providers in pediatric oncology. Cancer Nurs. 2001;24(2):122–34.CrossRefGoogle Scholar
  24. 24.
    Lyon ME, et al. Family-centered advance care planning for teens with cancer. JAMA Pediatr. 2013;167(5):460–7.PubMedCrossRefPubMedCentralGoogle Scholar
  25. 25.
    Mack JW, Joffe S. Communicating about prognosis: ethical responsibilities of pediatricians and parents. Pediatrics. 2014;133 Suppl 1:S24–30.CrossRefGoogle Scholar
  26. 26.
    Durall A, Zurakowski D, Wolfe J. Barriers to conducting advance care discussions for children with life-threatening conditions. Pediatrics. 2012;129(4):e975–82.PubMedCrossRefPubMedCentralGoogle Scholar
  27. 27.
    Levine DR, et al. Patients’ and parents’ needs, attitudes, and perceptions about early palliative care Integration in pediatric oncology.. JAMA Oncol, vol. 3; 2017. p. 1214.Google Scholar
  28. 28.
    Kamihara J, et al. Parental hope for children with advanced cancer. Pediatrics. 2015;135(5):868–74.CrossRefGoogle Scholar
  29. 29.
    Heckford E, Beringer AJ. Advance care planning: challenges and approaches for pediatricians. J Palliat Med. 2014;17(9):1049–53.PubMedCrossRefPubMedCentralGoogle Scholar
  30. 30.
    Mack JW, et al. Hope and prognostic disclosure. J Clin Oncol. 2007;25(35):5636–42.CrossRefGoogle Scholar
  31. 31.
    Bluebond-Langner M, et al. Understanding parents’ approaches to care and treatment of children with cancer when standard therapy has failed. J Clin Oncol. 2007;25(17):2414–9.PubMedCrossRefGoogle Scholar
  32. 32.
    Levine DR, et al. Does phase 1 trial enrollment preclude quality end-of-life care? Phase 1 trial enrollment and end-of-life care characteristics in children with cancer. Cancer. 2015;121(9):1508–12.PubMedCrossRefPubMedCentralGoogle Scholar
  33. 33.
    Valdez-Martinez E, Noyes J, Bedolla M. When to stop? Decision-making when children’s cancer treatment is no longer curative: a mixed-method systematic review. BMC Pediatr. 2014;14:124.PubMedPubMedCentralCrossRefGoogle Scholar
  34. 34.
    <Trying to be a good parent as defined by interviews with parents who made phase I, terminal care, and resuscitation decisions for their children.pdf>. Google Scholar
  35. 35.
    <Titrating-guidance-in-complex-decisions.pdf>. Google Scholar
  36. 36.
    Carroll KW, et al. Influences on decision making identified by parents of children receiving pediatric palliative care. AJOB Prim Res. 2012;3(1):1–7.PubMedPubMedCentralCrossRefGoogle Scholar
  37. 37.
    Levine D, et al. Best practices for pediatric palliative cancer care: a primer for clinical providers. J Support Oncol. 2013;32(3):114–25.CrossRefGoogle Scholar
  38. 38.
    Feudtner C. Collaborative communication in pediatric palliative care: a foundation for problem-solving and decision-making. Pediatr Clin N Am. 2007;54(5):583–607.. ixCrossRefGoogle Scholar
  39. 39.
    <Preferences of Physicians and Their Patients for EOL Care.pdf>. Google Scholar
  40. 40.
    Mack JW, et al. Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information. J Clin Oncol. 2006;24(33):5265–70.CrossRefGoogle Scholar
  41. 41.
    Sisk BA, et al. Prognostic disclosures to children: a historical perspective. Pediatrics. 2016;138(3).PubMedPubMedCentralCrossRefGoogle Scholar
  42. 42.
    Nyborn JA, et al. Dont try to cover the sky with your hands- parents’ experiences with prognosis communication about their children with advanced cancer. J Palliat Med. 2016;19(6).PubMedCrossRefPubMedCentralGoogle Scholar
  43. 43.
    <Extent and determinants of error in doctors prognoses in terminally ill patients- prospective cohort study.pdf>. Google Scholar
  44. 44.
    Smith A. Uncertainty - the other side of prognosis. N Engl J Med. 2013;368(26):2445–8.CrossRefGoogle Scholar
  45. 45.
    Hinds PS, et al. End-of-life care preferences of pediatric patients with cancer. J Clin Oncol. 2005;23(36):9146–54.CrossRefGoogle Scholar
  46. 46.
    Wiener L, et al. Allowing adolescents and young adults to plan their end-of-life care. Pediatrics. 2012;130(5):897–905.PubMedPubMedCentralCrossRefGoogle Scholar
  47. 47.
    Weaver MS, et al. Adolescents’ preferences for treatment decisional involvement during their cancer. Cancer. 2015;121(24):4416–24.PubMedCrossRefPubMedCentralGoogle Scholar
  48. 48.
    Rosenberg AR, et al. Ethics, emotions, and the skills of talking about progressing disease with terminally ill adolescents: a review. JAMA Pediatr. 2016;170(12):1216–23.PubMedPubMedCentralCrossRefGoogle Scholar
  49. 49.
    <Involving Children And Adolescents in Medical Decision Making- Developmental and Clinical Considerations.pdf>. Google Scholar
  50. 50.
    Charland LC. Decision-making capacity. The Stanford Encyclopedia of Philosophy (Fall 2015 Edition); 2011. Available from: https://plato.stanford.edu/archives/fall2015/entries/decision-capacity/.
  51. 51.
    Back A, Arnold R, Tulsky J. Mastering communication with seriously Ill patients. UK: Cambridge University Press; 2009.Google Scholar
  52. 52.
    <Dealing with Conflict in Caring for the Seriously Ill.pdf>. Google Scholar
  53. 53.
    <National Survey of Children’s Hospitals on Legacy Making Activities.pdf>. Google Scholar
  54. 54.
    <Pediatric Palliative Cre.pdf>. Google Scholar
  55. 55.
    Foster TL, et al. Bereaved parents’ and siblings’ reports of legacies created by children with cancer. J Pediatr Oncol Nurs. 2009;26(6):369–76.CrossRefGoogle Scholar
  56. 56.
    <Bereaved Parents and SIblings offer Advice to HCP and Researchers.pdf>. Google Scholar
  57. 57.
    Dussel V, et al. Looking beyond where children die: determinants and effects of planning a child’s location of death. J Pain Symptom Manag. 2009;37(1):33–43.CrossRefGoogle Scholar
  58. 58.
    Kassam A, et al. Parent and clinician preferences for location of end-of-life care: home, hospital or freestanding hospice? Pediatr Blood Cancer. 2014;61(5):859–64.PubMedPubMedCentralCrossRefGoogle Scholar
  59. 59.
    <Advanced cancer in children- how parents decide on final place of care for their dying child.pdf>. Google Scholar
  60. 60.
    <Partners in PPC- A Program to Enhance Collaboration between Hospital and Community PC Services.pdf>. Google Scholar
  61. 61.
    Kaye EC, et al. Pediatric palliative care in the community. CA Cancer J Clin. 2015;65(4):316–33.PubMedPubMedCentralCrossRefGoogle Scholar
  62. 62.
    Bluebond-Langner M, et al. Preferred place of death for children and young people with life-limiting and life-threatening conditions: a systematic review of the literature and recommendations for future inquiry and policy. Palliat Med. 2013;27(8):705–13.PubMedPubMedCentralCrossRefGoogle Scholar
  63. 63.
    Burns JP, et al. Do-not-resuscitate order after 25 years. Crit Care Med. 2003;31(5):1543–50.PubMedCrossRefPubMedCentralGoogle Scholar
  64. 64.
    American Academy of Pediatrics Committee on Bioethics: Guidelines on Forgoing Life Sustaining Medical Treatment. Pediatrics. 1994;93(3):532–6.Google Scholar
  65. 65.
    <Understanding of Prognosis Among Parents of Children who Died of Cancer Impact on Treatment Goals and INtegration of Care.pdf>. Google Scholar
  66. 66.
    Bell CJ, et al. End-of-life experiences in adolescents dying with cancer. Support Care Cancer. 2010;18(7):827–35.PubMedCrossRefPubMedCentralGoogle Scholar
  67. 67.
    Sanderson A, Zurakowski D, Wolfe J. Clinician perspectives regarding the do-not-resuscitate order. JAMA Pediatr. 2013;167(10):954–8.PubMedCrossRefPubMedCentralGoogle Scholar
  68. 68.
    Dellon EP, et al. Caregiver perspectives on discussions about the use of intensive treatments in cystic fibrosis. J Pain Symptom Manag. 2010;40(6):821–8.CrossRefGoogle Scholar
  69. 69.
    Edwards JD, et al. EOL discussions and ACP for children on long term assisted ventilation with life limiting conitions. J Palliat Care. 2012;28(1):21–7.PubMedPubMedCentralCrossRefGoogle Scholar
  70. 70.
    Diekema DS, Botkin JR, Committee on Bioethics. Clinical report--Forgoing medically provided nutrition and hydration in children. Pediatrics. 2009;124(2):813–22.PubMedCrossRefGoogle Scholar
  71. 71.
    <Terminal Dehydration- A Compassionate Treatment.pdf>. Google Scholar
  72. 72.
    <Terminal Nutrition- Framing the Debate for the Withdrawal of Nutritional Support in Terminally Ill Patients.pdf>. Google Scholar
  73. 73.
    <Withdrawing Intensive Life Sustaining Treatment - Recommendations for compassionate clinical management.pdf>. Google Scholar
  74. 74.
    <Discontinuing Artificial Fluids and Nutrition- Discussions with Families.pdf>. Google Scholar
  75. 75.
    <Blood transfusion and its benefits in palliative care.pdf>. Google Scholar
  76. 76.
    Mannis GN, et al. The transfusion tether: bridging the gap between end-stage hematologic malignancies and optimal end-of-life care. Am J Hematol. 2016;91(4):364–5.PubMedCrossRefGoogle Scholar
  77. 77.
    Wolfe J, et al. Symptoms and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST study. J Clin Oncol. 2015;33(17):1928–35.PubMedPubMedCentralCrossRefGoogle Scholar
  78. 78.
    Preston NJ, et al. Blood transfusions for anaemia in patients with advanced cancer. Cochrane Database Syst Rev. 2012;2:CD009007.Google Scholar
  79. 79.
    Stiel S, et al. Antibiotics in palliative medicine--results from a prospective epidemiological investigation from the HOPE survey. Support Care Cancer. 2012;20(2):325–33.PubMedCrossRefPubMedCentralGoogle Scholar
  80. 80.
    Helde-Frankling M, et al. Antibiotic treatment in end-of-life cancer patients-A retrospective observational study at a palliative care center in Sweden. Cancers (Basel). 2016;8(9).PubMedCentralCrossRefGoogle Scholar
  81. 81.
    Albrecht JS, et al. A nationwide analysis of antibiotic use in hospice care in the final week of life. J Pain Symptom Manag. 2013;46(4):483–90.CrossRefGoogle Scholar
  82. 82.
    <anti infective therapy at the end of life - ethical decision amking in hospice eligible patients.pdf>. Google Scholar
  83. 83.
    Tomlinson D, et al. Chemotherapy versus supportive care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals. CMAJ. 2011;183(17):E1252–8.PubMedPubMedCentralCrossRefGoogle Scholar
  84. 84.
    <Decision Making by Parents of Children with Incurable Cancer who Opt for Enrollment on a Phase I Clinical Trial Compared with Choosing a DNR:Terminal Care Option.pdf>. Google Scholar
  85. 85.
    Baker JN, et al. Bereaved parents’ intentions and suggestions about research autopsies in children with lethal brain tumors. J Pediatr. 2013;163(2):581–6.PubMedPubMedCentralCrossRefGoogle Scholar
  86. 86.
    Sullivan J, Monagle P. Bereaved parents’ perceptions of the autopsy examination of their child. Pediatrics. 2011;127(4):e1013–20.PubMedCrossRefPubMedCentralGoogle Scholar
  87. 87.
    <The experiences of donor families in hospice.pdf>. Google Scholar
  88. 88.
    <What do Parents Want to Know When COnsidering Autopsy for Their Child With Cancer.pdf>. Google Scholar
  89. 89.
    <Pediatrics and the patient self determination act.pdf>. Google Scholar
  90. 90.
    Liberman DB, Pham PK, Nager AL. Pediatric advance directives: parents’ knowledge, experience, and preferences. Pediatrics. 2014;134(2):e436–43.PubMedCrossRefPubMedCentralGoogle Scholar
  91. 91.
    <Dying Young Cues from the Courts.pdf>. Google Scholar
  92. 92.
    <Palliative care for children with cancer.pdf>. Google Scholar
  93. 93.
    <Affirming the Decisions Adolescents Make about Life and Death.pdf>. Google Scholar
  94. 94.
    Wiener L, et al. How I wish to be remembered: the use of an advance care planning document in adolescent and young adult populations. J Palliat Med. 2008;11(10):1309–13.PubMedCentralCrossRefGoogle Scholar
  95. 95.
    Zadeh S, Pao M, Wiener L. Opening end-of-life discussions: how to introduce Voicing My CHOiCES, an advance care planning guide for adolescents and young adults. Palliat Support Care. 2015;13(3):591–9.PubMedCrossRefPubMedCentralGoogle Scholar
  96. 96.
    Hickman SE, Keevern E, Hammes BJ. Use of the physician orders for life-sustaining treatment program in the clinical setting: a systematic review of the literature. J Am Geriatr Soc. 2015;63(2):341–50.PubMedCrossRefPubMedCentralGoogle Scholar
  97. 97.
    Boss RD, et al. Novel legislation for pediatric advance directives: surveys and focus groups capture parent and clinician perspectives. Palliat Med. 2015;29(4):346–53.PubMedCrossRefPubMedCentralGoogle Scholar
  98. 98.
    Paradigm NP. State programs. Available from: http://polst.org/programs-in-your-state/.
  99. 99.
    <Advance Directives in the ER.pdf>. Google Scholar
  100. 100.
    <DNR Orders in School.pdf>. Google Scholar
  101. 101.
    Bosslet GT, et al. An official ATS policy statement responding to requests for potentially inappropriate treatments in ICUs. Am J Respir Crit Care Med. 2015;191(11):1318–30.CrossRefGoogle Scholar
  102. 102.
    <resource consumption and the extent of futile care among patients in a PICU setting.pdf>. Google Scholar
  103. 103.
    Vemuri G, Playfor SD. Futility and inappropriate care in pediatric intensive care: a cross-sectional survey. Paediatr Anaesth. 2006;16(3):309–13.PubMedCrossRefPubMedCentralGoogle Scholar
  104. 104.
    Tennessee Department of Health, D.o.H.L.a.R., Tennessee physician orders for scope of treatment.Google Scholar

Copyright information

© Springer Nature Switzerland AG 2020

Authors and Affiliations

  • Allison Caldwell
    • 1
    • 2
    • 3
  • Melody J. Cunningham
    • 4
    • 5
  • Justin N. Baker
    • 6
    Email author
  1. 1.MMC Palliative MedicinePortlandUSA
  2. 2.Pediatrics, Main Medical CenterPortlandUSA
  3. 3.Maine Medical Partners NeurologyScarboroughUSA
  4. 4.Threads of Care, Palliative Care Program, Le Bonheur Children’s HospitalMemphisUSA
  5. 5.Pediatrics-General, The University of Tennessee Health Science CenterMemphisUSA
  6. 6.Oncology Department, Quality of Life and Palliative Care DivisionSt. Jude Children’s Research HospitalMemphisUSA

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