Skip to main content
SpringerLink
Log in

Decision-Making Involvement Throughout the Illness Trajectory

  • Chapter
  • First Online:
Palliative Care in Hematologic Malignancies and Serious Blood Disorders

  • 138 Accesses

Abstract

Decision-making involvement is the relational process of supporting pediatric patient involvement in healthcare decision-making. This chapter aims to address the role of the pediatric patient in decision-making throughout the illness trajectory, and factors influencing individual patient and family preferences for decision-making involvement. The role of clinicians in facilitating pediatric patient involvement in decision-making is explored. Common barriers to decision-making involvement are addressed with recommendations for managing these barriers, including those such as caregiver interference and discordant beliefs. Methods of facilitating involvement across the continuum of development are discussed, and particular attention is given to determining the appropriate level of involvement based on individual patient and caregiver characteristics. This chapter includes suggestions for assessing competency to participate in individual care decisions and references helpful clinical tools for application in practice.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 129.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Hardcover Book
USD 169.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. Committee on Bioethics AA of P. Informed consent, parental permission, and assent in pediatric practice. Pediatrics. 1995;95(2):314.

    Article  Google Scholar 

  2. Miller VA. Involving youth with a chronic illness in decision-making: highlighting the role of providers. Pediatrics. 2018;142(Supplement 3):S142–8. https://doi.org/10.1542/peds.2018-0516D.

    Article  PubMed  Google Scholar 

  3. Katz AL, Webb SA. Informed consent in decision-making in pediatric practice. Pediatrics. 2016;138(2):e20161485. https://doi.org/10.1542/peds.2016-1485.

    Article  PubMed  Google Scholar 

  4. Adams RC, Levy SE. Shared decision-making and children with disabilities: pathways to consensus. Pediatrics. 2017;139(6):e20170956. https://doi.org/10.1542/peds.2017-0956.

    Article  PubMed  Google Scholar 

  5. Miller VA, Harris D. Measuring children’s decision-making involvement regarding chronic illness management. J Pediatr Psychol. 2012;37(3):292–306. https://doi.org/10.1093/jpepsy/jsr097.

    Article  PubMed  Google Scholar 

  6. Alderson P. Competent children? Minors’ consent to health care treatment and research. Soc Sci Med. 2007;65(11):2272–83.

    Article  PubMed  Google Scholar 

  7. Treseder P. Empowering children and young people: training manual: promoting involvement in decision making. London: Save the Children; 1997.

    Google Scholar 

  8. Lipstein EA, Muething KA, Dodds CM, Britto MT. “I’m the one taking it”: adolescent participation in chronic disease treatment decisions. J Adolesc Health. 2013;53(2):253–9.

    Article  PubMed  Google Scholar 

  9. Miller VA. Parent–child collaborative decision making for the management of chronic illness: a qualitative analysis. Fam Syst Health. 2009;27(3):249–66. https://doi.org/10.1037/a0017308.

    Article  PubMed  PubMed Central  Google Scholar 

  10. Bluebond-Langner M, Belasco JB, DeMesquita WM. “I want to live, until I don’t want to live anymore”: involving children with life-threatening and life-shortening illnesses in decision making about care and treatment. Nurs Clin N Am. 2010;45(3):329–43.

    Article  Google Scholar 

  11. Hammes B, Briggs L. Building a systems approach to advance care planning. La Crosse: Gundersen Lutheran Medical Foundation, Inc.; 2011.

    Google Scholar 

  12. Erikson E. Identity: youth and crisis. New York: Norton & Co.; 1968.

    Google Scholar 

  13. Miller VA, Jawad AF. Relationship of youth involvement in diabetes-related decisions to treatment adherence. J Clin Psychol Med Settings. 2014;21(2):183–9. https://doi.org/10.1007/s10880-014-9388-1.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Monaghan M, Hilliard M, Sweenie R, Riekert K. Transition readiness in adolescents and emerging adults with diabetes: the role of patient-provider communication. Curr Diabetes Rep. 2013;13(6):900–8. https://doi.org/10.1007/s11892-013-0420-x.

    Article  Google Scholar 

  15. White FA. Parent-adolescent communication and adolescent decision-making*. J Fam Stud. 1996;2(1):41–56. https://doi.org/10.5172/jfs.2.1.41.

    Article  Google Scholar 

  16. Wiener L, Zadeh S, Wexler LH, Pao M. When silence is not golden: engaging adolescents and young adults in discussions around end-of-life care choices. Pediatr Blood Cancer. 2013;60(5):715–8. https://doi.org/10.1002/pbc.24490.

    Article  PubMed  PubMed Central  Google Scholar 

  17. Arnett JJ. Emerging adulthood: a theory of development from the late teens through the twenties. Am Psychol. 2000;55(5):469–80. https://doi.org/10.1037/0003-066X.55.5.469.

    Article  CAS  PubMed  Google Scholar 

  18. Miller VA, Cousino MK. The role of children and adolescents in decision making about life-threatening illness. Oxford: Oxford University Press; 2021.

    Book  Google Scholar 

  19. Rosenblum KL, Dayton CJ, Muzik M. Infant social and emotional development: emerging competence in a relational context. In: Zeannah Jr CH, editor. Handbook of infant mental health. 3rd ed. New York: The Guilford Press; 2009. p. 80–103.

    Google Scholar 

  20. Vern-Gross T. Establishing communication within the field of pediatric oncology: a palliative care approach. Curr Probl Cancer. 2011;35(6):337–50.

    Article  PubMed  Google Scholar 

  21. Mårtenson EK, Fägerskiöld AM. A review of children’s decision-making competence in health care. J Clin Nurs. 2008;17(23):3131–41. https://doi.org/10.1111/j.1365-2702.2006.01920.x.

    Article  PubMed  Google Scholar 

  22. Halpern-Felsher BL, Millstein SG, Ellen JM, Adler NE, Tschann JM, Biehl M. The role of behavioral experience in judging risks. Health Psychol. 2001;20(2):120–6. https://doi.org/10.1037/0278-6133.20.2.120.

    Article  CAS  PubMed  Google Scholar 

  23. Melton G. Decision making by children: psychological risks and benefits. In: Melton GB, Koocher GP, Saks MJ, editors. Children’s competence to consent. New York: Plenum Press; 1983. p. 21–40.

    Chapter  Google Scholar 

  24. Weithorn LA, Campbell SB. The competency of children and adolescents to make informed treatment decisions. Child Dev. 1982;53(6):1589.

    Article  CAS  PubMed  Google Scholar 

  25. Miller VA, Drotar D, Kodish E. Children’s competence for assent and consent: a review of empirical findings. Ethics Behav. 2004;14(3):255–95. https://doi.org/10.1207/s15327019eb1403_3.

    Article  PubMed  Google Scholar 

  26. Grisso T, Appelbaum PS. Assessing competence to consent to treatment: a guide for physicians and other health professionals. New York: Oxford University Press; 1998.

    Book  Google Scholar 

  27. Manganello JA, Colvin KF, Chisolm DJ, Arnold C, Hancock J, Davis T. Validation of the rapid estimate for adolescent literacy in medicine short form (REALM-TeenS). Pediatrics. 2017;139(5):e20163286. https://doi.org/10.1542/peds.2016-3286.

    Article  PubMed  PubMed Central  Google Scholar 

  28. Ottawa Health Research Institute. Ottawa Personal Decision Guide. 2015. https://decisionaid.ohri.ca/docs/das/OPDG.pdf.

  29. Cousino MK, Rea KE, Mednick LM. Understanding the healthcare communication needs of pediatric patients through the my CHATT tool: a pilot study. J Commun Healthc. 2017;10(1):16–21. https://doi.org/10.1080/17538068.2017.1278637.

    Article  Google Scholar 

  30. Aging With Dignity. Voicing my choices. Tallahassee: Aging With Dignity; 2012.

    Google Scholar 

  31. Aging With Dignity. My wishes. Tallahassee: Aging With Dignity; 2015.

    Google Scholar 

  32. Institute for Healthcare Improvement. What Is “Ask, Tell, Ask”? http://www.ihi.org/education/IHIOpenSchool/resources/Pages/AudioandVideo/ConnieDavis-WhatIsAskTellAsk.aspx.

  33. Always Use Teach-back! [Training toolkit]. http://www.teachbacktraining.org. Accessed 24 Apr 2020.

  34. Arozullah AM, Yarnold PR, Bennett CL, Soltysik RC, Wolf MS, Ferreira RM, et al. Development and validation of a short-form, rapid estimate of adult literacy in medicine. Med Care. 2007;45(11):1026–33.

    Article  PubMed  Google Scholar 

  35. Ruhe KM, Wangmo T, Badarau DO, Elger BS, Niggli F. Decision-making capacity of children and adolescents—suggestions for advancing the concept’s implementation in pediatric healthcare. Eur J Pediatr. 2015;174(6):775–82. https://doi.org/10.1007/s00431-014-2462-8.

    Article  PubMed  Google Scholar 

  36. Holaday B, Lamontagne L, Marciel J. Vygotsky’s zone of proximal development: implications for nurse assistance of children’s learning. Issues Compr Pediatr Nurs. 1994;17(1):15–27. https://doi.org/10.3109/01460869409078285.

    Article  CAS  PubMed  Google Scholar 

  37. Alderson P, Sutcliffe K, Curtis K. Children’s competence to consent to medical treatment. Hast Cent Rep. 2006;36(6):25–34. http://muse.jhu.edu/content/crossref/journals/hastings_center_report/v036/36.6alderson.pdf

    Article  Google Scholar 

  38. Coyne I, Gallagher P. Participation in communication and decision-making: children and young people’s experiences in a hospital setting. J Clin Nurs. 2011;20(15–16):2334–43. https://doi.org/10.1111/j.1365-2702.2010.03582.x.

    Article  PubMed  Google Scholar 

  39. Kriston L, Scholl I, Hölzel L, Simon D, Loh A, Härter M. The 9-item shared decision making questionnaire (SDM-Q-9). Development and psychometric properties in a primary care sample. Patient Educ Couns. 2010;80(1):94–9.

    Article  PubMed  Google Scholar 

  40. Dunsmore J, Quine S. Information, support, and decision-making needs and preferences of adolescents with cancer. J Psychosoc Oncol. 1996;13(4):39–56. https://doi.org/10.1300/J077V13N04_03.

    Article  Google Scholar 

  41. Cousino MK, Schumacher KR, Magee JC, Wolfe J, Yu S, Eder SJ, et al. Communication about prognosis and end-of-life in pediatric organ failure and transplantation. Pediatr Transplant. 2019;23(3):13373. https://doi.org/10.1111/petr.13373.

    Article  Google Scholar 

  42. Angst DB, Deatrick JA. Involvement in health care decisions: parents and children with chronic illness. J Fam Nurs. 1996;2(2):174–94. https://doi.org/10.1177/107484079600200205.

    Article  Google Scholar 

  43. Kilkelly U, Donnelly M. The child’s right to be heard in the healthcare setting: perspectives of children. Dublin: Parents and Health Professionals; 2006.

    Google Scholar 

  44. Britto MT, Slap GB, DeVellis RF, Hornung RW, Atherton HD, Knopf JM, et al. Specialists understanding of the health care preferences of chronically ill adolescents. J Adolesc Health. 2007;40(4):334–41.

    Article  PubMed  Google Scholar 

  45. Coyne I, Amory A, Kiernan G, Gibson F. Children’s participation in shared decision-making: children, adolescents, parents and healthcare professionals’ perspectives and experiences. Eur J Oncol Nurs. 2014;18(3):273–80.

    Article  PubMed  Google Scholar 

  46. Rosenberg AR, Wolfe J, Wiener L, Lyon M, Feudtner C. Ethics, emotions, and the skills of talking about progressing disease with terminally ill adolescents. JAMA Pediatr. 2016;170(12):1216. https://doi.org/10.1001/jamapediatrics.2016.2142.

    Article  PubMed  PubMed Central  Google Scholar 

  47. Cousino MK, Miller VA, Smith C, Uzark K, Lowery R, Rottach N, et al. Medical and end-of-life decision making in adolescents’ pre-heart transplant: a descriptive pilot study. Palliat Med. 2020;34(3):272–80. https://doi.org/10.1177/0269216319874689.

    Article  PubMed  Google Scholar 

  48. Hinds PS, Schum L, Baker JN, Wolfe J. Key factors affecting dying children and their families. J Palliat Med. 2005;8(supplement 1):s-70–8. https://doi.org/10.1089/jpm.2005.8.s-70.

    Article  Google Scholar 

  49. Wangmo T, De Clercq E, Ruhe KM, Beck-Popovic M, Rischewski J, Angst R, et al. Better to know than to imagine: including children in their health care. AJOB Empir Bioeth. 2017;8(1):11–20. https://doi.org/10.1080/23294515.2016.1207724.

    Article  PubMed  Google Scholar 

  50. Jacobs S, Perez J, Cheng YI, Sill A, Wang J, Lyon ME. Adolescent end of life preferences and congruence with their parents’ preferences: results of a survey of adolescents with cancer. Pediatr Blood Cancer. 2015;62(4):710–4. https://doi.org/10.1002/pbc.25358.

    Article  PubMed  Google Scholar 

  51. Britto M, Cote M, Horning R, Slap G. Do adolescents with chronic illness want to make decisions about their treatment. J Adolesc Health. 2004;34(2):120.

    Article  Google Scholar 

  52. Knopf JM, Hornung RW, Slap GB, DeVellis RF, Britto MT. Views of treatment decision making from adolescents with chronic illnesses and their parents: a pilot study. Health Expect. 2008;11(4):343–54. https://doi.org/10.1111/j.1369-7625.2008.00508.x.

    Article  PubMed  PubMed Central  Google Scholar 

  53. van Staa A. Unraveling triadic communication in hospital consultations with adolescents with chronic conditions: the added value of mixed methods research. Patient Educ Couns. 2011;82(3):455–64.

    Article  PubMed  Google Scholar 

  54. Young B, Ward J, Salmon P, Gravenhorst K, Hill J, Eden T. Parents’ experiences of their children’s presence in discussions with physicians about leukemia. Pediatrics. 2011;127(5):e1230–8. https://doi.org/10.1542/peds.2010-2402.

    Article  PubMed  Google Scholar 

  55. de Vries MC, Bresters D, Kaspers GJL, Houtlosser M, Wit JM, Engberts DP, et al. What constitutes the best interest of a child? Views of parents, children, and physicians in a pediatric oncology setting. AJOB Prim Res. 2013;4(2):1–10. https://doi.org/10.1080/21507716.2012.757254.

    Article  Google Scholar 

  56. Hilden JM, Watterson J, Chrastek J, Anderson PM. Tell the children. J Clin Oncol. 2000;18(17):3193–5. https://doi.org/10.1200/JCO.2000.18.17.3193.

    Article  CAS  PubMed  Google Scholar 

  57. Kreicbergs U, Valdimarsdóttir U, Onelöv E, Henter J-I, Steineck G. Talking about death with children who have severe malignant disease. N Engl J Med. 2004;351(12):1175–86. https://doi.org/10.1056/NEJMoa040366.

    Article  CAS  PubMed  Google Scholar 

  58. Beresford BA, Sloper P. Chronically ill adolescents’ experiences of communicating with doctors: a qualitative study. J Adolesc Health. 2003;33(3):172–9.

    Article  PubMed  Google Scholar 

  59. Tates K, Meeuwesen L, Elbers E, Bensing J. “I’ve come for his throat”: roles and identities in doctor-parent-child communication. Child Care Health Dev. 2002;28(1):109–16. https://doi.org/10.1046/j.1365-2214.2002.00248.x.

    Article  CAS  PubMed  Google Scholar 

  60. Savage E, Callery P. Clinic consultations with children and parents on the dietary management of cystic fibrosis. Soc Sci Med. 2007;64(2):363–74.

    Article  PubMed  Google Scholar 

  61. Croom A, Wiebe DJ, Berg CA, Lindsay R, Donaldson D, Foster C, et al. Adolescent and parent perceptions of patient-centered communication while managing type 1 diabetes. J Pediatr Psychol. 2011;36(2):206–15. https://doi.org/10.1093/jpepsy/jsq072.

    Article  PubMed  Google Scholar 

  62. Kyngäs H, Hentinen M, Barlow JH. Adolescents’ perceptions of physicians, nurses, parents and friends: help or hindrance in compliance with diabetes self-care? J Adv Nurs. 1998;27(4):760–9. https://doi.org/10.1046/j.1365-2648.1998.00608.x.

    Article  PubMed  Google Scholar 

  63. Kyngas H, Rissanen M. Support as a crucial predictor of good compliance of adolescents with a chronic disease. J Clin Nurs. 2001;10(6):767–74. https://doi.org/10.1046/j.1365-2702.2001.00538.x.

    Article  CAS  PubMed  Google Scholar 

  64. Drotar D, Crawford P, Bonner M. Collaborative decision-making and promoting treatment adherence in pediatric chronic illness. In: Patient intelligence. Taylor & Francis; 2010. http://www.dovepress.com/collaborative-decision-making-and-promoting-treatment-adherence-in-ped-peer-reviewed-article-PI.

    Google Scholar 

  65. Freed LH, Ellen JM, Irwin CE, Millstein SG. Determinants of adolescents’ satisfaction with health care providers and intentions to keep follow-up appointments. J Adolesc Health. 1998;22(6):475–9.

    Article  CAS  PubMed  Google Scholar 

  66. Coyne I. Children’s participation in consultations and decision-making at health service level: a review of the literature. Int J Nurs Stud. 2008;45(11):1682–9.

    Article  PubMed  Google Scholar 

  67. Runeson I, Enskar K, Elander G, Hermeren G. Professionals’ perceptions of children’s participation in decision making in healthcare. J Clin Nurs. 2001;10(1):70–8. https://doi.org/10.1046/j.1365-2702.2001.00433.x.

    Article  CAS  PubMed  Google Scholar 

  68. Never MJ. Too young: how young children can take responsibility and make decisions: a handbook for early years workers. National Early Years Network; 1997.

    Google Scholar 

  69. Edwards A, Elwyn G. Inside the black box of shared decision making: distinguishing between the process of involvement and who makes the decision. Health Expect. 2006;9(4):307–20. https://doi.org/10.1111/j.1369-7625.2006.00401.x.

    Article  PubMed  PubMed Central  Google Scholar 

  70. Ruhe KM, De Clercq E, Wangmo T, Elger BS. Relational capacity: broadening the notion of decision-making capacity in paediatric healthcare. J Bioeth Inq. 2016;13(4):515–24. https://doi.org/10.1007/s11673-016-9735-z.

    Article  PubMed  Google Scholar 

  71. Bender B, Milgrom H, Rand C, Ackerson L. Psychological factors associated with medication nonadherence in asthmatic children. J Asthma. 1998;35(4):347–53. https://doi.org/10.3109/02770909809075667.

    Article  CAS  PubMed  Google Scholar 

  72. Kovacs M, Obrosky DS, Goldston D, Drash A. Major depressive disorder in youths with IDDM: a controlled prospective study of course and outcome. Diabetes Care. 1997;20(1):45–51. https://doi.org/10.2337/diacare.20.1.45.

    Article  CAS  PubMed  Google Scholar 

  73. Ricker JH, Delamater AM, Hsu J. Correlates of regimen adherence in cystic fibrosis. J Clin Psychol Med Settings. 1998;5(2):159–72.

    Article  Google Scholar 

  74. Silva K, Miller VA. The role of cognitive and psychosocial maturity in type 1 diabetes management. J Adolesc Health. 2019;64(5):622–30.

    Article  PubMed  PubMed Central  Google Scholar 

  75. Institute of Medicine. Dying in America. Washington, DC: National Academic Press; 2015. http://www.nap.edu/catalog/18748

    Google Scholar 

  76. Masera G, Chesler MA, Jankovic M, Ablin AR, Ben Arush MW, Breatnach F, et al. SIOP working committee on psychosocial issues in pediatric oncology: guidelines for communication of the diagnosis. Med Pediatr Oncol. 1997;28(5):382–5. https://doi.org/10.1002/(sici)1096-911x(199705)28:5<382::aid-mpo12>3.0.co;2-d.

    Article  CAS  PubMed  Google Scholar 

  77. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES—A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5(4):302–11. https://doi.org/10.1634/theoncologist.5-4-302.

    Article  CAS  PubMed  Google Scholar 

  78. Bluebond-Langner M. The private words of dying children. Princeton: Princeton University Press; 1980.

    Google Scholar 

  79. Blazin L, Cecchini C, Habashy C, Kaye E, Baker J. Communicating effectively in pediatric cancer care: translating evidence into practice. Children. 2018;5(3):40.

    Article  PubMed  PubMed Central  Google Scholar 

  80. Zadeh S, Pao M, Wiener L. Opening end-of-life discussions: how to introduce voicing my CHOiCESTM, an advance care planning guide for adolescents and young adults. Palliat Support Care. 2015;13(3):591–9.

    Article  PubMed  Google Scholar 

  81. Sisk BA, Bluebond-Langner M, Wiener L, Mack J, Wolfe J. Prognostic disclosures to children: a historical perspective. Pediatrics. 2016;138(3):e20161278. https://doi.org/10.1542/peds.2016-1278.

    Article  PubMed  PubMed Central  Google Scholar 

  82. Zadeh S, Wiener L. This is my world. 2nd ed. Bethesda: National Institute of Health; 2011.

    Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Department of Pediatrics, C.S. Mott Children’s Hospital, Ann Arbor, MI, USA

    Maura A. Miglioretti & Melissa K. Cousino

  2. Department of Pediatrics, C.S. Mott Children’s Hospital, University of Michigan Medical School, Ann Arbor, MI, USA

    Emily M. Fredericks

Authors
  1. Maura A. Miglioretti
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Emily M. Fredericks
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Melissa K. Cousino
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Melissa K. Cousino .

Editor information

Editors and Affiliations

  1. Harvard Medical School, Boston, MA, USA

    Christina K. Ullrich

  2. Oregon Health and Science University, Portland, OR, USA

    Eric J. Roeland

Rights and permissions

Reprints and permissions

Copyright information

© 2023 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Miglioretti, M.A., Fredericks, E.M., Cousino, M.K. (2023). Decision-Making Involvement Throughout the Illness Trajectory. In: Ullrich, C.K., Roeland, E.J. (eds) Palliative Care in Hematologic Malignancies and Serious Blood Disorders. Springer, Cham. https://doi.org/10.1007/978-3-031-38058-7_10

Download citation

  • DOI: https://doi.org/10.1007/978-3-031-38058-7_10

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-031-38057-0

  • Online ISBN: 978-3-031-38058-7

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation