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Interfacing with Palliative and End-of-Life Care and Ethical Decisions

  • Anna C. Muriel
  • Chase Samsel
  • Maryland Pao
Chapter

Abstract

The Pediatric psychosomatic medicine is increasingly in the role of collaboration with pediatric palliative care teams. Child psychiatrists bring unique and complementary expertise about a child’s cognitive, emotional and physical development in the context of serious medical illness, especially when there is psychiatric and medical co-morbidity. Through case examples, this chapter offers guidance about improving targeted treatment, quality of life, and outcomes for dying youth and their families.

Keywords

Palliative medicine Hospice care Ethics Medical Pediatrics Medicine Psychosomatic Child psychiatry 

References

  1. 1984. American Academy of Pediatrics Infant Bioethics Task Force and Consultants: Guidelines for infant bioethics committees. Pediatrics, 74 , 306–310.Google Scholar
  2. Anghelescu, D. L., Hamilton, H., Faughnan, L. G., Johnson, L. M., & Baker, J. N. (2012). Pediatric palliative sedation therapy with propofol: Recommendations based on experience in children with terminal cancer. Journal of Palliative Medicine, 15, 1082–1090.CrossRefGoogle Scholar
  3. Bartell, A. S., & Kissane, D. W. (2005). Issues in pediatric palliative care: Understanding families. Journal of Palliative Care, 21, 165–172.PubMedGoogle Scholar
  4. Brinkman, T. M., Zhang, N., Recklitis, C. J., Kimberg, C., Zeltzer, L. K., Muriel, A. C., Stovall, M., Srivastava, D. K., Sklar, C. A., Robison, L. L., & Krull, K. R. (2014, January 15). Suicide ideation and associated mortality in adult survivors of childhood cancer. Cancer, 120(2), 271–277.  https://doi.org/10.1002/cncr.28385. Epub 2013 Oct 7.CrossRefGoogle Scholar
  5. Brook, L., et al. (2008). A plan for living and a plan for dying: Advanced care planning for children. Archives of Disease in Childhood, 93(suppl), A61–A66.Google Scholar
  6. Buxton, D. (2015). Child and adolescent psychiatry and palliative care. Journal of the American Academy of Child and Adolescent Psychiatry, 54, 791–792.CrossRefGoogle Scholar
  7. Feraco, A. M., Brand, S. R., Mack, J. W., Kesselheim, J. C., Block, S. D., & Wolfe, J. (2016). Communication skills training in pediatric oncology: Moving beyond role modeling. Pediatric Blood & Cancer, 63, 966–972.CrossRefGoogle Scholar
  8. Feudtner, C., Womer, J., Augustin, R., Remke, S., Wolfe, J., Friebert, S., & Weissman, D. (2013). Pediatric palliative care programs in children's hospitals: A cross-sectional national survey. Pediatrics, 132, 1063–1070.CrossRefGoogle Scholar
  9. DE Graeff, A. & Dean, M. 2007. Palliative sedation therapy in the last weeks of life: A literature review and recommendations for standards. Journal of Palliative Medicine, 10, 67–85.CrossRefGoogle Scholar
  10. Groves, A., Traube, C., & Silver, G. (2016). Detection and Management of Delirium in the neonatal unit: A case series. Pediatrics, 137, e20153369.CrossRefGoogle Scholar
  11. Hays, R. M., Valentine, J., Haynes, G., Geyer, J. R., Villareale, N., Mckinstry, B., Varni, J. W., & Churchill, S. S. (2006). The Seattle pediatric palliative care project: Effects on family satisfaction and health-related quality of life. Journal of Palliative Medicine, 9, 716–728.CrossRefGoogle Scholar
  12. Himelstein, B. P., Hilden, J. M., Boldt, A. M., & Weissman, D. (2004). Pediatric palliative care. The New England Journal of Medicine, 350, 1752–1762.CrossRefGoogle Scholar
  13. 2016. International Statistics (Summary of IARC Report) [Online]. http://www.acco.org/blog/iccd-2017-info-graphics/. American Childhood Cancer Organization. Accessed 24 July 2017.
  14. Jonsen, A. R., Siegler, M. & Winslade, W. J. 2015. Clinical ethics, 8th edition: A practical approach to ethical decisions in clinical medicine, 8E, McGraw-Hill Education.Google Scholar
  15. Joyce, C., Witcher, R., Herrup, E., Kaur, S., Mendez-Rico, E., Silver, G., Greenwald, B. M., & Traube, C. (2015). Evaluation of the safety of quetiapine in treating delirium in critically ill children: A retrospective review. Journal of Child and Adolescent Psychopharmacology, 25, 666–670.CrossRefGoogle Scholar
  16. Kochanek K. D., Murphy, S. L., Xu, J. Q., & Tejada-Vera, B.. (2016). Final data for 2014. National vital statistics reports. National Center for Health Statistics [Online], 65.Google Scholar
  17. Lotz, J. D., Jox, R. J., Borasio, G. D., & Fuhrer, M. (2013). Pediatric advance care planning: A systematic review. Pediatrics, 131, e873–e880.CrossRefGoogle Scholar
  18. Lyon, M. E., Garvie, P. A., Mccarter, R., Briggs, L., He, J., & D’Angelo, L. J. (2009). Who will speak for me? Improving end-of-life decision-making for adolescents with HIV and their families. Pediatrics, 123, e199–e206.CrossRefGoogle Scholar
  19. Lyon, M. E., Jacobs, S., Briggs, L., Cheng, Y. I., & Wang, J. (2013). Family-centered advance care planning for teens with cancer. JAMA Pediatrics, 167, 460–467.CrossRefGoogle Scholar
  20. Mack, J. W., Hilden, J. M., Watterson, J., Moore, C., Turner, B., Grier, H. E., Weeks, J. C., & Wolfe, J. (2005). Parent and physician perspectives on quality of care at the end of life in children with cancer. Journal of Clinical Oncology, 23, 9155–9161.CrossRefGoogle Scholar
  21. Mccullough, L. B., & Ashton, C. M. (1994). A methodology for teaching ethics in the clinical setting: A clinical handbook for medical ethics. Theoretical Medicine, 15, 39–52.CrossRefGoogle Scholar
  22. Muriel, A. C., Wolfe, J., & Block, S. D. (2016). Pediatric palliative care and child psychiatry: A model for enhancing practice and collaboration. Journal of Palliative Medicine, 19, 1032–1038.CrossRefGoogle Scholar
  23. 2017. Pediatric Palliative Care [Online]. www.capc.org/topics/pediatric-palliative-care/. Center to Advance Palliative Care. Accessed 24 July 2017.
  24. Richmond, C. (2005). Dame Cicely Saunders. BMJ: British Medical Journal, 331, 238.CrossRefGoogle Scholar
  25. Rourke, M. T. (2007). Compassion fatigue in pediatric palliative care providers. Pediatric Clinics of North America, 54, 631–644.CrossRefGoogle Scholar
  26. Silver, G., Kearney, J., Traube, C., & Hertzig, M. (2015). Delirium screening anchored in child development: The Cornell assessment for pediatric delirium. Palliative & Supportive Care, 13, 1005–1011.CrossRefGoogle Scholar
  27. Sisk, B. A., Bluebond-Langner, M., Wiener, L., Mack, J., & Wolfe, J. (2016). Prognostic disclosures to children: A historical perspective. Pediatrics, 138, e20161278.CrossRefGoogle Scholar
  28. Temel, J. S., Greer, J. A., Muzikansky, A., Gallagher, E. R., Admane, S., Jackson, V. A., Dahlin, C. M., Blinderman, C. D., Jacobsen, J., Pirl, W. F., Billings, J. A., & Lynch, T. J. (2010). Early palliative care for patients with metastatic non-small-cell lung cancer. The New England Journal of Medicine, 363, 733–742.CrossRefGoogle Scholar
  29. Traube, C., Silver, G., Gerber, L. M., Kaur, S., Mauer, E. A., Kerson, A., Joyce, C., & Greenwald, B. M. (2017). Delirium and mortality in critically ill children: Epidemiology and outcomes of pediatric delirium. Critical Care Medicine, 45, 891–898.CrossRefGoogle Scholar
  30. Weaver, M. S., Heinze, K. E., Kelly, K. P., Wiener, L., Casey, R. L., Bell, C. J., Wolfe, J., Garee, A. M., Watson, A., & Hinds, P. S. (2015). Palliative care as a standard of care in pediatric oncology. Pediatric Blood & Cancer, 62(Suppl 5), S829–S833.CrossRefGoogle Scholar
  31. Weaver, M. S., Heinze, K. E., Bell, C. J., Wiener, L., Garee, A. M., Kelly, K. P., Casey, R. L., Watson, A., Hinds, P. S., & Pediatric Palliative Care Special Interest Group at Children's National Health System. (2016). Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review. Palliative Medicine, 30, 212–223.CrossRefGoogle Scholar
  32. Wiener, L., Zadeh, S., Battles, H., Baird, K., Ballard, E., Osherow, J., & Pao, M. (2012). Allowing adolescents and young adults to plan their end-of-life care. Pediatrics, 130, 897–905.CrossRefGoogle Scholar
  33. Wiener, L., Zadeh, S., Wexler, L. H., & Pao, M. (2013). When silence is not golden: Engaging adolescents and young adults in discussions around end-of-life care choices. Pediatric Blood & Cancer, 60, 715–718.CrossRefGoogle Scholar
  34. Wiener, L., Kazak, A. E., Noll, R. B., Patenaude, A. F., & Kupst, M. J. (2015). Standards for the psychosocial care of children with cancer and their families: An introduction to the special issue. Pediatric Blood & Cancer, 62(Suppl 5), S419–S424.CrossRefGoogle Scholar
  35. Wolfe, J., Hammel, J. F., Edwards, K. E., Duncan, J., Comeau, M., Breyer, J., Aldridge, S. A., Grier, H. E., Berde, C., Dussel, V., & Weeks, J. C. (2008). Easing of suffering in children with cancer at the end of life: Is care changing? Journal of Clinical Oncology, 26, 1717–1723.CrossRefGoogle Scholar
  36. Zadeh, S., Pao, M., & Wiener, L. (2015). Opening end-of-life discussions: How to introduce voicing my CHOiCES, an advance care planning guide for adolescents and young adults. Palliative & Supportive Care, 13, 591–599.CrossRefGoogle Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Dana-Farber Cancer Institute and Boston Children’s HospitalBostonUSA
  2. 2.National Institute of Mental Health, NIHBethesdaUSA

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