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Patient Preferences and Surrogate Decision Making in Neuroscience Intensive Care Units

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Abstract

In the neuroscience intensive care unit (NICU), most patients lack the capacity to make their own preferences known. This fact leads to situations where surrogate decision makers must fill the role of the patient in terms of making preference-based treatment decisions, oftentimes in challenging situations where prognosis is uncertain. The neurointensivist has a large responsibility and role to play in this shared decision-making process. This review covers how NICU patient preferences are determined through existing advance care documentation or surrogate decision makers and how the optimum roles of the physician and surrogate decision maker are addressed. We outline the process of reaching a shared decision between family and care team and describe a practice for conducting optimum family meetings based on studies of ICU families in crisis. We review challenges in the decision-making process between surrogate decision makers and medical teams in neurocritical care settings, as well as methods to ameliorate conflicts. Ultimately, the goal of shared decision making is to increase knowledge amongst surrogates and care providers, decrease decisional conflict, promote realistic expectations and preference-centered treatment strategies, and lift the emotional burden on families of neurocritical care patients.

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References

  1. Patient Self Determination Act. Pub.L. No. 101-508, ss 4206(a), 4751(m), 104 Stat. 1388-116, 1388-205 (1990).

  2. Starr P. The Social Transformation of American Medicine. New York: Basic Books; 1982.

    Google Scholar 

  3. Holloway RG, Gramling R, Kelly AG. Estimating and communicating prognosis in advanced neurologic disease. Neurology. 2013;80:764–72.

    Article  PubMed Central  PubMed  Google Scholar 

  4. Brudney D. Choosing for another: beyond autonomy and best interests. Hastings Cent Rep. 2009;39:31–7.

    Article  PubMed  Google Scholar 

  5. Smedira NG, Evans BH, Grais LS, et al. Withholding and withdrawal of life support from the critically ill. N Engl J Med. 1990;322:309–15.

    Article  CAS  PubMed  Google Scholar 

  6. Rid A, Wendler D. Can we improve treatment decision-making for incapacitated patients? Hastings Cent Rep. 2010;40:36–45.

    Article  PubMed  Google Scholar 

  7. US Government Printing Office. President’s Commission for the study of ethical problems in medicine and biomedical and behavioral research: making health care decision, vol. 1. Washington: US Government Printing Office; 1982.

    Google Scholar 

  8. Buchanan ABD. Deciding for others, the ethics of surrogate decision making. New York: Cambridge University Press; 1989.

    Google Scholar 

  9. Appelbaum PS, Grisso T. Assessing patients’ capacities to consent to treatment. N Engl J Med. 1988;319:1635–8.

    Article  CAS  PubMed  Google Scholar 

  10. Brown PF, Tulloch AD, Mackenzie C, Owen GS, Szmukler G, Hotopf M. Assessments of mental capacity in psychiatric inpatients: a retrospective cohort study. BMC Psychiatry. 2013;13:115.

    Article  PubMed Central  PubMed  Google Scholar 

  11. Ranjith G, Hotopf M. ‘Refusing treatment–please see’: an analysis of capacity assessments carried out by a liaison psychiatry service. J R Soc Med. 2004;97:480–2.

    Article  PubMed Central  PubMed  Google Scholar 

  12. Patak L, Gawlinski A, Fung NI, Doering L, Berg J, Henneman EA. Communication boards in critical care: patients’ views. Appl Nurs Res. 2006;19:182–90.

    Article  PubMed  Google Scholar 

  13. Stein J. Brady Wagner LC. Is informed consent a “yes or no” response? Enhancing the shared decision-making process for persons with aphasia. Top Stroke Rehabil. 2006;13:42–6.

    Article  PubMed  Google Scholar 

  14. Schreuder M, Riccio A, Risetti M, et al. User-centered design in brain-computer interfaces-a case study. Artif Intell Med. 2013;59:71–80.

    Article  PubMed  Google Scholar 

  15. MacDonald MMK, Essig B. Health Care Law. New York: Matthew Bender; 1991.

    Google Scholar 

  16. American Academy of Neurology Policy on Consent Issues for the Administration of IV tPA. https://www.aan.com/uploadedFiles/Website_Library_Assets/Documents/6.Public_Policy/1.Stay_Informed/2.Position_Statements/3.PDFs_of_all_Position_Statements/IV.pdf. Accessed 13 Dec 2014.

  17. Tilden VP, Tolle SW, Nelson CA, Fields J. Family decision-making to withdraw life-sustaining treatments from hospitalized patients. Nurs Res. 2001;50:105–15.

    Article  CAS  PubMed  Google Scholar 

  18. Majesko A, Hong SY, Weissfeld L, White DB. Identifying family members who may struggle in the role of surrogate decision maker. Crit Care Med. 2012;40:2281–6.

    Article  PubMed Central  PubMed  Google Scholar 

  19. American Bar Association Commission on Dying and Aging: Myths and Facts About Health Care Advance Directives. http://www.americanbar.org/content/dam/aba/migrated/Commissions/myths_fact_hc_ad.authcheckdam.pdf. Accessed 13 Dec 2014.

  20. American Bar Association: Giving Someone Power of Attorney. http://www.americanbar.org/content/dam/aba/uncategorized/2011/2011_aging_hcdec_univhcpaform.authcheckdam.pdf. Accessed 16 Jan 2015.

  21. Download your state’s advance directives. http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289. Accessed 16 Jan 2015.

  22. About the National POLST Paradigm. http://www.polst.org/about-the-national-polst-paradigm. Accessed 16 Jan 2015.

  23. Bomba PA, Kemp M, Black JS. POLST: An improvement over traditional advance directives. Cleve Clin J Med. 2012;79:457–64.

    Article  PubMed  Google Scholar 

  24. POLST Programs in your state. http://www.polst.org/programs-in-your-state. Accessed 16 Jan 2015.

  25. American Bar Association Guardianship and Caregiver Liability. http://www.americanbar.org/content/newsletter/publications/gp_solo_magazine_home/gp_solo_magazine_index/guardianshipliability.html. Accessed 16 Jan 2015.

  26. American Bar Association (ed.) Aging ABACoDa. Myths and facts about health care advance directives. Washington: American Bar Association.

  27. Default Surrogate Consent Statutes. http://www.americanbar.org/content/dam/aba/administrative/law_aging/2014_default_surrogate_consent_statutes.authcheckdam.pdf. Accessed 13 Dec 2014.

  28. Fried TR, Bradley EH, Towle VR, Allore H. Understanding the treatment preferences of seriously ill patients. N Engl J Med. 2002;346:1061–6.

    Article  PubMed  Google Scholar 

  29. Kurtz P, Fitts V, Sumer Z, et al. How does care differ for neurological patients admitted to a neurocritical care unit versus a general ICU? Neurocrit Care. 2011;15:477–80.

    Article  PubMed  Google Scholar 

  30. White DB, Curtis JR, Lo B, Luce JM. Decisions to limit life-sustaining treatment for critically ill patients who lack both decision-making capacity and surrogate decision-makers. Crit Care Med. 2006;34:2053–9.

    Article  PubMed  Google Scholar 

  31. Bandy RJ, Helft PR, Bandy RW, Torke AM. Medical decision-making during the guardianship process for incapacitated, hospitalized adults: a descriptive cohort study. J Gen Intern Med. 2010;25:1003–8.

    Article  PubMed Central  PubMed  Google Scholar 

  32. Suhl J, Simons P, Reedy T, Garrick T. Myth of substituted judgment. Surrogate decision making regarding life support is unreliable. Arch Intern Med. 1994;154:90–6.

    Article  CAS  PubMed  Google Scholar 

  33. Seckler AB, Meier DE, Mulvihill M, Paris BE. Substituted judgment: how accurate are proxy predictions? Ann Intern Med. 1991;115:92–8.

    Article  CAS  PubMed  Google Scholar 

  34. Prendergast TJ. Advance care planning: pitfalls, progress, promise. Crit Care Med. 2001;29:N34–9.

    Article  CAS  PubMed  Google Scholar 

  35. Puchalski CM, Zhong Z, Jacobs MM, et al. Patients who want their family and physician to make resuscitation decisions for them: observations from SUPPORT and HELP. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Hospitalized Elderly Longitudinal Project. J Am Geriatr Soc. 2000;48:S84–90.

    Article  CAS  PubMed  Google Scholar 

  36. Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington DC: National Academies Press; 2001.

    Google Scholar 

  37. 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;35:605–22.

    Article  PubMed  Google Scholar 

  38. Thompson BT, Cox PN, Antonelli M, et al. Challenges in end-of-life care in the ICU: statement of the 5th International Consensus Conference in Critical Care: Brussels, Belgium, April 2003: executive summary. Crit Care Med. 2004;32:1781–4.

    Article  PubMed  Google Scholar 

  39. Curtis JR, White DB. Practical guidance for evidence-based ICU family conferences. Chest. 2008;134:835–43.

    Article  PubMed Central  PubMed  Google Scholar 

  40. Billings JA, Krakauer EL. On patient autonomy and physician responsibility in end-of-life care. Arch Intern Med. 2011;171:849–53.

    Article  PubMed  Google Scholar 

  41. Holloway RG, Arnold RM, Creutzfeldt CJ, et al. Palliative and end-of-life care in stroke: a statement for healthcare professionals from the American Heart Association/American Stroke Association. Stroke. 2014;45:1887–916.

    Article  PubMed  Google Scholar 

  42. Quill TE, Brody H. Physician recommendations and patient autonomy: finding a balance between physician power and patient choice. Ann Intern Med. 1996;125:763–9.

    Article  CAS  PubMed  Google Scholar 

  43. Cronberg T, Lilja G, Horn J, et al. Neurologic function and health-related quality of life in patients following targeted temperature management at 33°C vs 36°C after out-of-hospital cardiac arrest: a randomized clinical trial. JAMA Neurol. 2015. doi:10.1001/jamaneurol.2015.0169

  44. Charles C, Whelan T, Gafni A. What do we mean by partnership in making decisions about treatment? BMJ. 1999;319:780–2.

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  45. Azoulay E, Chevret S, Leleu G, et al. Half the families of intensive care unit patients experience inadequate communication with physicians. Crit Care Med. 2000;28:3044–9.

    Article  CAS  PubMed  Google Scholar 

  46. White DB, Malvar G, Karr J, Lo B, Curtis JR. Expanding the paradigm of the physician’s role in surrogate decision-making: an empirically derived framework. Crit Care Med. 2010;38:743–50.

    Article  PubMed Central  PubMed  Google Scholar 

  47. Gries CJ, Engelberg RA, Kross EK, et al. Predictors of symptoms of posttraumatic stress and depression in family members after patient death in the ICU. Chest. 2010;137:280–7.

    Article  PubMed Central  PubMed  Google Scholar 

  48. Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154:336–46.

    Article  PubMed  Google Scholar 

  49. Berger JT, DeRenzo EG, Schwartz J. Surrogate decision making: reconciling ethical theory and clinical practice. Ann Intern Med. 2008;149:48–53.

    Article  PubMed  Google Scholar 

  50. Lilly CM, De Meo DL, Sonna LA, et al. An intensive communication intervention for the critically ill. Am J Med. 2000;109:469–75.

    Article  CAS  PubMed  Google Scholar 

  51. Mcdonagh JR, Elliott TB, Engelberg RA, et al. Family satisfaction with family conferences about end-of-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction. Crit Care Med. 2004;32:1484–8.

    Article  PubMed  Google Scholar 

  52. Stapleton RD, Engelberg RA, Wenrich MD, Goss CH, Curtis JR. Clinician statements and family satisfaction with family conferences in the intensive care unit*. Crit Care Med. 2006;34:1679–85.

    Article  PubMed  Google Scholar 

  53. Wiegand D. In their own time: the family experience during the process of withdrawal of life-sustaining therapy. J Palliat Med. 2008;11:1115–21.

    Article  PubMed Central  PubMed  Google Scholar 

  54. Hwang DY, Yagoda D, Perrey HM, et al. Anxiety and depression symptoms among families of adult intensive care unit survivors immediately following brief length of stay. J Crit Care. 2014;29:278–82.

    Article  PubMed  Google Scholar 

  55. Quill TE, Holloway RG. Evidence, preferences, recommendations–finding the right balance in patient care. N Engl J Med. 2012;366:1653–5.

    Article  CAS  PubMed  Google Scholar 

  56. Schenker Y, White DB, Crowley-Matoka M, Dohan D, Tiver GA, Arnold RM. “It hurts to know… and it helps”: exploring how surrogates in the ICU cope with prognostic information. J Palliat Med. 2013;16:243–9.

    Article  PubMed Central  PubMed  Google Scholar 

  57. Webb J. What are we asking? The impact of surrogate decision making. J Pain Symptom Manag. 2011;41:313.

    Article  Google Scholar 

  58. Thornton JD, Pham K, Engelberg RA, Jackson JC, Curtis JR. Families with limited English proficiency receive less information and support in interpreted intensive care unit family conferences. Crit Care Med. 2009;37:89–95.

    Article  PubMed Central  PubMed  Google Scholar 

  59. Silberfeld M, Grundstein-Amado R, Stephens D, Deber R. Family and physicians’ views of surrogate decision-making: the roles and how to choose. Int Psychogeriatr. 1996;8:589–96.

    Article  CAS  PubMed  Google Scholar 

  60. Kentish-Barnes N, Lemiale V, Chaize M, Pochard F, Azoulay E. Assessing burden in families of critical care patients. Crit Care Med. 2009;37:S448–56.

    Article  PubMed  Google Scholar 

  61. Siegel MD, Hayes E, Vanderwerker LC, Loseth DB, Prigerson HG. Psychiatric illness in the next of kin of patients who die in the intensive care unit. Crit Care Med. 2008;36:1722–8.

    Article  PubMed  Google Scholar 

  62. Davidson JE, Jones C, Bienvenu OJ. Family response to critical illness: postintensive care syndrome-family. Crit Care Med. 2012;40:618–24.

    Article  PubMed  Google Scholar 

  63. Pochard F, Azoulay E, Chevret S, et al. Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity. Crit Care Med. 2001;29:1893–7.

    Article  CAS  PubMed  Google Scholar 

  64. Hansen L, Archbold PG, Stewart BJ. Role strain and ease in decision-making to withdraw or withhold life support for elderly relatives. J Nurs Scholarsh. 2004;36:233–8.

    Article  PubMed  Google Scholar 

  65. Lautrette A, Darmon M, Megarbane B, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med. 2007;356:469–78.

    Article  CAS  PubMed  Google Scholar 

  66. Norton SA, Hogan LA, Holloway RG, Temkin-Greener H, Buckley MJ, Quill TE. Proactive palliative care in the medical intensive care unit: effects on length of stay for selected high-risk patients. Crit Care Med. 2007;35:1530–5.

    Article  PubMed  Google Scholar 

  67. Muehlschlegel S, Shutter L, Col N, Goldberg R. Decision aids and shared decision-making in neurocritical care: an unmet need in our NeuroICUs. Neurocrit Care. 2015;47(1):44–50.

    Google Scholar 

  68. Stacey D, Legare F, Col NF, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2014;1:CD001431.

    PubMed  Google Scholar 

  69. Fraenkel L. Incorporating patients’ preferences into medical decision making. Med Care Res Rev. 2013;70:80S–93S.

    Article  PubMed Central  PubMed  Google Scholar 

  70. Snyder EA, Caprio AJ, Wessell K, Lin FC, Hanson LC. Impact of a decision aid on surrogate decision-makers’ perceptions of feeding options for patients with dementia. J Am Med Dir Assoc. 2013;14:114–8.

    Article  PubMed Central  PubMed  Google Scholar 

  71. Hatler CW, Grove C, Strickland S, Barron S, White BD. The effect of completing a surrogacy information and decision-making tool upon admission to an intensive care unit on length of stay and charges. J Clin Ethics. 2012;23:129–38.

    PubMed  Google Scholar 

  72. Cox CE, Lewis CL, Hanson LC, et al. Development and pilot testing of a decision aid for surrogates of patients with prolonged mechanical ventilation. Crit Care Med. 2012;40:2327–34.

    Article  PubMed  Google Scholar 

  73. George BP, Kelly AG, Schneider EB, Holloway RG. Current practices in feeding tube placement for US acute ischemic stroke inpatients. Neurology. 2014;83:874–82.

    Article  PubMed  Google Scholar 

  74. Fassier T, Azoulay E. Conflicts and communication gaps in the intensive care unit. Curr Opin Crit Care. 2010;16:654–65.

    Article  PubMed  Google Scholar 

  75. Chiarchiaro J, Buddadhumaruk P, Arnold RM, White DB. Quality of communication in the ICU and surrogate’s understanding of prognosis*. Crit Care Med. 2015;43:542–8.

    Article  PubMed  Google Scholar 

  76. Boyd EA, Lo B, Evans LR, et al. “It’s not just what the doctor tells me:” factors that influence surrogate decision-makers’ perceptions of prognosis. Crit Care Med. 2010;38:1270–5.

    PubMed Central  PubMed  Google Scholar 

  77. Hemphill JC, White DB. Clinical nihilism in neuroemergencies. Emergency medicine clinics of North America 2009;27:27–37, vii-viii.

  78. Larach DR, Larach DB, Larach MG. A life worth living: seven years after craniectomy. Neurocrit Care. 2009;11:106–11.

    Article  PubMed  Google Scholar 

  79. Quill TE, Holloway R. Time-limited trials near the end of life. JAMA. 2011;306:1483–4.

    Article  CAS  PubMed  Google Scholar 

  80. Burns JP, Truog RD. Futility: a concept in evolution. Chest. 2007;132:1987–93.

    Article  PubMed  Google Scholar 

  81. Schneiderman LJ. Effect of ethics consultations in the intensive care unit. Crit Care Med. 2006;34:S359–63.

    Article  PubMed  Google Scholar 

  82. Schneiderman LJ, Gilmer T, Teetzel HD. Impact of ethics consultations in the intensive care setting: a randomized, controlled trial. Crit Care Med. 2000;28:3920–4.

    Article  CAS  PubMed  Google Scholar 

  83. Unroe KT, Ersek M, Cagle J. The IOM report on dying in America: a call to action for nursing homes. J Am Med Dir Assoc. 2014;16(2):90–2.

    Article  PubMed  Google Scholar 

  84. Hwang DY, Yagoda D, Perrey HM, et al. Assessment of satisfaction with care among family members of survivors in a neuroscience intensive care unit. J Neurosci Nurs. 2014;46:106–16.

    Article  PubMed Central  PubMed  Google Scholar 

  85. Tawil I, Brown LH, Comfort D, et al. Family presence during brain death evaluation: a randomized controlled trial*. Crit Care Med. 2014;42:934–42.

    Article  PubMed  Google Scholar 

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Acknowledgments

Liana Fraenkel receives research support from the NIH 5K24AR060231-02, 5P60AR047782, and the VA Health Services Research IIR. David Y. Hwang has received an American Brain Foundation Practice Research Training Fellowship. Douglas B. White receives research support from NIH 1R01AG045176-01 and 1R01NR014663.

Conflict of interest

Xuemei Cai, Jennifer Robinson, Susanne Muehlschlegel, Kevin N. Sheth, and Robert G. Holloway declare that they have no conflicts of interest. Douglas B. White has no relevant conflicts of interest.

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Cai, X., Robinson, J., Muehlschlegel, S. et al. Patient Preferences and Surrogate Decision Making in Neuroscience Intensive Care Units. Neurocrit Care 23, 131–141 (2015). https://doi.org/10.1007/s12028-015-0149-2

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