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Journal of Bioethical Inquiry

, Volume 15, Issue 2, pp 185–191 | Cite as

The Voice Is As Mighty As the Pen: Integrating Conversations into Advance Care Planning

  • Kunal Bailoor
  • Leslie H. Kamil
  • Ed Goldman
  • Laura M. Napiewocki
  • Denise Winiarski
  • Christian J. Vercler
  • Andrew G. Shuman
Critical Perspectives

Abstract

Advance care planning allows patients to articulate preferences for their medical treatment, lifestyle, and surrogate decision-makers in order to anticipate and mitigate their potential loss of decision-making capacity. Written advance directives are often emphasized in this regard. While these directives contain important information, there are several barriers to consider: veracity and accuracy of surrogate decision-makers in making choices consistent with the substituted judgement standard, state-to-state variability in regulations, literacy issues, lack of access to legal resources, lack of understanding of medical options, and cultural disparities. Given these issues, it is vital to increase the use of patient and healthcare provider conversations as an advance care planning tool and to increase integration of such discourse into advance care planning policy as adjuncts and complements to written advance directives. This paper reviews current legislation about written advance directives and dissects how documentation of spoken interactions might be integrated and considered. We discuss specific institutional policy changes required to facilitate implementation. Finally, we explore the ethical issues surrounding the increased usage and recognition of clinician–patient conversations in advance care planning.

Keywords

Advance care planning Advance directive Surrogate decision-making Substituted judgement 

References

  1. Bartholome, G. 1995. Informed consent, parental permission, and assent in pediatric practice. Pediatrics 95(2): 314–317.Google Scholar
  2. Billings, J.A. 2012. The need for safeguards in advance care planning. Journal of General Internal Medicine 27(5): 595–600.Google Scholar
  3. Boucher, N.A., E. Guadalupe, L. Lara, and M. Alejandro. 2014. Health care and end-of-life decisions: Community engagement with adults in East Harlem. Journal of Community Health 39(6): 1032–1039.Google Scholar
  4. Boyd, E.A., B. Lo, L.R. Evans, et al. 2010. “It’s not just what the doctor tells me:” Factors that influence surrogate decision-makers’ perceptions of prognosis. Critical Care Medicine 38(5): 1270–1275.Google Scholar
  5. Brinkman-Stoppelenburg, A., J.A. Rietjens, and A. van der Heide. 2014. The effects of advance care planning on end-of-life care: a systematic review. Palliative Medicine 28(8): 1000–1025.Google Scholar
  6. Castillo, L.S., B.A Williams, S.M. Hooper, C.P. Sabatino, L.A. Weithorn, and R.L. Sudore. 2011. Lost in translation: The unintended consequences of advance directive law on clinical care. Annals of Internal Medicine 154(2): 121–128.Google Scholar
  7. Ditto, P.H., J.A. Jacobson, W.D. Smucker, J.H. Danks, and A. Fagerlin. 2006. Context changes choices: A prospective study of the effects of hospitalization on life-sustaining treatment preferences. Medical Decision Making 26(4): 313–322.Google Scholar
  8. Emanuel, L.L., C.F. von Gunten, and F.D. Ferris. 2000. Advance care planning. Archives of Family Medicine 9(10): 1181–1187.Google Scholar
  9. Emanuel, L.L., and E.J. Emanuel. 2010. The medical directive: A new comprehensive advance care document. Journal of the American Medical Association 261(22): 3288–3293.Google Scholar
  10. Fins, J.J., B.S. Maltby, E. Friedmann, et al. 2005. Contracts, covenants and advance care planning: An empirical study of the moral obligations of patient and proxy. Journal of Pain and Symptom Management 29(1): 55–68.Google Scholar
  11. Fried, T.R., E.H. Bradley, V.R. Towle, and H. Allore. 2002. Understanding the treatment preferences of seriously ill patients. New England Journal of Medicine 346(14): 1061–1066.Google Scholar
  12. Heyland, D.K., C. Frank, D. Groll, et al. 2006. Understanding cardiopulmonary resuscitation decision making: perspectives of seriously ill hospitalized patients and family members. Chest 130(2): 419–428.Google Scholar
  13. Hickman, S., C. Sabatino, A. Moss, and J. Nester. 2008. The POLST paradigm to improve end-of-life care: Potential state legal barriers to implementation. Journal of Law, Medicine, and Ethics 36(1): 119–140.Google Scholar
  14. Hilliard, T.S., T. Washington, C. Hines, and T. McGill. 2013. Wishes left unspoken: Engaging underserved populations in end-of-life advance care planning. Journal of Health Care for the Poor and Underserved 24(3): 979–986.Google Scholar
  15. Houben, C.H.M, M.A Spruit, M.T.J Groenen, E.F.M Wouters, and D.J.A Janssen. 2014. Efficacy of advance care planning: a systematic review and meta-analysis. Journal of the American Medical Directors Association 15(7): 477–489.Google Scholar
  16. Jacobsen, J., E. Robinson, V.A. Jackson, J.B. Meigs, and J.A. Billings. 2011. Development of a cognitive model for advance care planning discussions: results from a quality improvement initiative. Journal of Palliative Medicine 14(3):331–336.Google Scholar
  17. Janssen, D.J., M.A. Spruit, J.M.J.A. Schols, et al. 2012. Predicting changes in preferences for life-sustaining treatment among patients with advanced chronic organ failure. Chest 2012:1251–1259.Google Scholar
  18. Jennings, L., D. Zingmond, R. Louie, C. Tseng, J. Thomas, K. O’Malley, and N. Wenger. 2016. Use of the physician orders for life sustaining treatment among California nursing home residents. Journal of General Internal Medicine 31(10): 1119–1126.Google Scholar
  19. Jilka, S.R., R. Callahan, N. Sevdalis, E.K. Mayer, and A. Darzi. 2015. “Nothing about me without me”: An interpretative review of patient accessible electronic health records. Journal of Medical Internet Research 17(6): e161.Google Scholar
  20. Lotz, J.D., R.J. Jox, G.D. Borasio, and M. Führer. 2013. Pediatric advance care planning: A systematic review. Pediatrics 131(3): e873–e880.Google Scholar
  21. ———. 2015. Pediatric advance care planning from the perspective of health care professionals: A qualitative interview study. Palliative Medicine 29(3): 212–222.Google Scholar
  22. Meisel, A., L. Snyder, and T. Quill. 2000. Seven legal barriers to end-of-life care: Myths, realities, and grains of truth. Journal of the American Medical Association 284(19): 2495–2501.Google Scholar
  23. Mueller, L.A., K.I. Reid, and P.S. Mueller. 2010. Readability of state-sponsored advance directive forms in the United States: A cross-sectional study. British Medical Care Medical Ethics 11: 6.Google Scholar
  24. Pedraza, S., S. Culp, B.S. Falkenstine, and A. Moss. 2016. POLST forms more than advance directives associated with out-of-hospital death: Insights from a state registry. Journal of Pain and Symptom Management 51(2): 240–246.Google Scholar
  25. Sabatino, C.P. 2010. The evolution of health care advance planning law and policy. The Milbank Quarterly 88(2): 211–239.Google Scholar
  26. Shalowitz, D.I., E. Garrett-Mayer, and D. Wendler. 2006. The accuracy of surrogate decision makers. Archives of Internal Medicine 166(5): 493.Google Scholar
  27. Shortell, S.M., J.A. Marsteller, M. Lin, et al. 2004. The role of perceived team effectiveness in improving chronic illness care. Medical Care 42(11): 1040–1048.Google Scholar
  28. Silveira, M.J., S.Y.H Kim, and K.M. Langa. 2010. Advance directives and outcomes of surrogate decision making before death. New England Journal of Medicine 362(13): 1211–1218.Google Scholar
  29. Smith, A.K., R.L. Sudore, and E.J. Pérez-Stable. 2009. Palliative care for Latino patients and their families: Whenever we prayed, she wept. Journal of the American Medical Association 301(10): 1047–1057.Google Scholar
  30. Steinhauser, K.E., E.C. Clipp, M. McNeilly, N.A. Christakis, L.M. McIntyre, and J.A. Tulsky. 2000. In search of a good death: Observations of patients, families, and providers. Annals of Internal Medicine 132(10): 825–832.Google Scholar
  31. Stouthard, J., L. Brom, and H.M. Buiting. 2017. Having a conversation with a patient with incurable cancer—Just another protocol? Journal of the American Medical Association: Oncology 3(10): 1305–1306.Google Scholar
  32. Torke, A.M., G.C. Alexander, and J. Lantos. 2008. Substituted judgment: The limitations of autonomy in surrogate decision making. Journal of General Internal Medicine 23(9): 1514–1517.Google Scholar
  33. Winter, L., S.M. Parks, J.J. Diamond. 2010. Ask a different question, get a different answer: Why living wills are poor guides to care preferences at the end of life. Journal of Palliative Medicine 13(5): 567–572.Google Scholar
  34. Wright, A.A., B. Zhang, A. Ray, et al. 2008. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. Journal of the American Medical Association 300(14): 1665–1673.Google Scholar

Copyright information

© Journal of Bioethical Inquiry Pty Ltd. 2018

Authors and Affiliations

  • Kunal Bailoor
    • 1
  • Leslie H. Kamil
    • 1
  • Ed Goldman
    • 1
  • Laura M. Napiewocki
    • 1
  • Denise Winiarski
    • 1
  • Christian J. Vercler
    • 1
  • Andrew G. Shuman
    • 1
  1. 1.University of Michigan Medical SchoolAnn ArborUSA

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