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Development of a post–intensive care unit storytelling intervention for surrogates involved in decisions to limit life-sustaining treatment

Published online by Cambridge University Press:  13 February 2014

Yael Schenker
Affiliation:
Division of General Internal Medicine, Department of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania
Mary Amanda Dew
Affiliation:
Department of Psychiatry, University of Pittsburgh, Pittsburgh, Pennsylvania
Charles F. Reynolds III
Affiliation:
Department of Psychiatry, University of Pittsburgh, Pittsburgh, Pennsylvania
Robert M. Arnold
Affiliation:
Section of Palliative Care and Medical Ethics, University of Pittsburgh, Pittsburgh, Pennsylvania and Palliative and Supportive Institute, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania
Greer A. Tiver
Affiliation:
Division of General Internal Medicine, Department of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania
Amber E. Barnato*
Affiliation:
Division of General Internal Medicine, Department of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania
*
Address correspondence and reprint requests to Amber E. Barnato, University of Pittsburgh, 200 Meyran Avenue, Suite 200, Pittsburgh, Pennsylvania 15213. E-mail: barnatoae@upmc.edu.

Abstract

Objective:

Surrogates involved in decisions to limit life-sustaining treatment for a loved one in the intensive care unit (ICU) are at increased risk for adverse psychological outcomes that can last for months to years after the ICU experience. Post-ICU interventions to reduce surrogate distress have not yet been developed. We sought to (1) describe a conceptual framework underlying the beneficial mental health effects of storytelling, and (2) present formative work developing a storytelling intervention to reduce distress for recently bereaved surrogates.

Method:

An interdisciplinary team conceived the idea for a storytelling intervention based on evidence from narrative theory that storytelling reduces distress from traumatic events through emotional disclosure, cognitive processing, and social connection. We developed an initial storytelling guide based on this theory and the clinical perspectives of team members. We then conducted a case series with recently bereaved surrogates to iteratively test and modify the guide.

Results:

The storytelling guide covered three key domains of the surrogate's experience of the patient's illness and death: antecedents, ICU experience, and aftermath. The facilitator focused on the parts of a story that appeared to generate strong emotions and used nonjudgmental statements to attend to these emotions. Between September 2012 and May 2013, we identified 28 eligible surrogates from a medical ICU and consented 20 for medical record review and recontact; 10 became eligible, of whom 6 consented and completed the storytelling intervention. The single-session storytelling intervention lasted from 40 to 92 minutes. All storytelling participants endorsed the intervention as acceptable, and five of six reported it as helpful.

Significance of Results:

Surrogate storytelling is an innovative and acceptable post-ICU intervention for recently bereaved surrogates and should be evaluated further.

Type
Original Articles
Copyright
Copyright © Cambridge University Press 2014 

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References

REFERENCES

Anderson, W.G., Arnold, R.M. & Bryce, C.L. (2008). Posttraumatic stress and complicated grief in family members of patients in the intensive care unit. Journal of General Internal Medicine, 23(11), 18711876.Google Scholar
Anderson, W.G., Arnold, R.M., Angus, D.C., et al. (2009). Passive decision-making preference is associated with anxiety and depression in relatives of patients in the intensive care unit. Journal of Critical Care, 24(2), 249254.Google Scholar
Angus, D.C., Barnato, A.E., Linde-Zwirble, W.T., et al. (2004). Use of intensive care at the end of life in the United States: An epidemiologic study. Critical Care Medicine, 32(3), 638643.Google Scholar
Azoulay, E., Pochard, F., Kentish-Barnes, N., et al. (2005). Risk of post-traumatic stress symptoms in family members of intensive care unit patients. American Journal of Respiratory and Critical Care Medicine, 171(9), 987994.Google Scholar
Back, A, Arnold, R. & Tulsky, J. (2009). Mastering communication with seriously ill patients. New York: Cambridge University Press.Google Scholar
Berger, J.T., DeRenzo, E.G. & Schwarz, J. (2008). Surrogate decision making: reconciling ethical theory and clinical practice. Annals of Internal Medicine, 149(1), 4853.Google Scholar
Braun, U.K., Beyth, R.J., Ford, M.E., et al. (2008). Voices of African American, Caucasian, and Hispanic surrogates on the burdens of end-of-life decision making. Journal of General Internal Medicine, 23(3), 267274.Google Scholar
Braun, U.K., Naik, A.D. & McCullough, L.B. (2009). Reconceptualizing the experience of surrogate decision making: Reports vs. genuine decisions. Annals of Family Medicine, 7(3), 249253.Google Scholar
Brehaut, J.C., O'Connor, A.M., Wood, T.J., et al. (2003). Validation of a decision regret scale. Medical Decision Making, 23(4), 281292.Google Scholar
Bruner, J. (2002). Narratives of human plight: A conversation with Jerome Bruner. In Stories matter: The role of narrative in medical ethics. Charon, R. & Montello, M. (eds.), pp. 39. New York: Routledge.Google Scholar
Cameron, L.D. & Nicholls, G. (1998). Expression of stressful experiences through writing: effects of a self-regulation manipulation for pessimists and optimists. Health Psychology, 17(1), 8492.Google Scholar
Charon, R. (2006). The sources of narrative medicine. In Narrative medicine, p. 9. New York: Oxford University Press.Google Scholar
Charon, R. & Montello, M. (eds.) (2002). Stories matter: The role of narrative in medical ethics. New York: Routledge.Google Scholar
Charon, R. & Montello, M. (2002). Memory and anticipation: The practice of narrative ethics. In Stories matter: The role of narrative in medical ethics. Charon, R. & Montello, M. (eds.), pp. ixxii. New York: Routledge.Google Scholar
Clark, L.F. (1993). Stress and the cognitive-conversational benefits of social interaction. Journal of Social and Clinical Psychology, 12, 2555.Google Scholar
Cox, C.E., Lewis, C.L., Hanson, L.C., et al. (2012). Development and pilot testing of a decision aid for surrogates of patients with prolonged mechanical ventilation. Critical Care Medicine, 40(8), 23272334.Google Scholar
Curtis, J.R. & White, D.B. (2008). Practical guidance for evidence-based ICU family conferences. Chest, 134(4), 835843.Google Scholar
Curtis, J.R., Nielsen, E.L., Treece, P.D., et al. (2011). Effect of a quality-improvement intervention on end-of-life care in the intensive care unit: A randomized trial. American Journal of Respiratory and Critical Care Medicine, 183(3), 348355.Google Scholar
Davidson, J.E., Powers, K., Hedayat, K.M., et al. (2007). 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. Critical Care Medicine, 35(2), 605622.Google Scholar
Davidson, J.E., Jones, C. & Bienvenu, O.J. (2012). Family response to critical illness: Post–intensive care syndrome family. Critical Care Medicine, 40(2), 618624.Google Scholar
Greenberg, M.A., Wortman, C.B. & Stone, A.A. (1996). Emotional expression and physical health: Revising traumatic memories or fostering self-regulation? Journal of Personality and Social Psychology, 71(3), 588602.Google Scholar
Gries, C.J., Engelberg, R.A., Kross, E.K., et al. (2010). Predictors of symptoms of posttraumatic stress and depression in family members after patient death in the ICU. Chest, 137(2), 280287.Google Scholar
Holahan, C.J., Moos, R.H., Holahan, C.K., et al. (1996). Social support, coping, and depressive symptoms in a late-middle-aged sample of patients reporting cardiac illness. Health Psychology, 14(2), 152163.Google Scholar
Houston, T.K., Allison, J.J., Sussman, M., et al. (2011). Culturally appropriate storytelling to improve blood pressure: A randomized trial. Annals of Internal Medicine, 154(2), 7784.Google Scholar
Jones, C., Skirrow, P., Griffiths, R.C., et al. (2004). Post-traumatic stress disorder-related symptoms in relatives of patients following intensive care. Intensive Care Medicine, 30(3), 456460.Google Scholar
Kross, E.K., Engelberg, R.A., Gries, C.J., et al. (2011). ICU care associated with symptoms of depression and posttraumatic stress disorder among family members of patients who die in the ICU. Chest, 139(4), 795801.Google Scholar
Kryworuchko, J. (2009). Understanding the options: Planning care for critically ill patients in the intensive care unit. Ottawa: Ottawa Patient Decision Aid Research Group. Available from http://decisionaid.ohri.ca/docs/das/Critically_Ill_Decision_Support.pdf.Google Scholar
Larkey, L.K. & Gonzalez, J. (2007). Storytelling for promoting colorectal cancer prevention and early detection among Latinos. Patient Education and Counseling, 67(3), 272278.Google Scholar
Larkey, L.K., Lopez, A.M., Minnal, A., et al. (2009). Storytelling for promoting colorectal cancer screening among underserved Latina women: A randomized pilot study. Cancer Control, 16(1), 7987.Google Scholar
Lautrette, A., Darmon, M., Megarbane, B., et al. (2007). A communication strategy and brochure for relatives of patients dying in the ICU. The New England Journal of Medicine, 356(5), 469478.Google Scholar
McCormick, A.J., Curtis, J.R., Stowell-Weiss, P., et al. (2010). Improving social work in intensive care unit palliative care: Results of a quality improvement intervention. Journal of Palliative Medicine, 13(3), 297304.Google Scholar
Mitchell, S.L., Tetroe, J. & O'Connor, A.M. (2001). A decision aid for long-term tube feeding in cognitively impaired older persons. Journal of the American Geriatrics Society, 49(3), 313316.Google Scholar
Murphy, P., Kreling, B., Kathryn, E., et al. (2000). Description of the SUPPORT intervention: Study to understand prognoses and preferences for outcomes and risks of treatments. Journal of the American Geriatrics Society, 48(5 Suppl.), S154S161.Google Scholar
Niederhoffer, K. & Pennebaker, J. (2002). Sharing one's story: On the benefits of writing or talking about emotional experience. In Handbook of positive psychology. Snyder, C. & Lopez, S. (eds.), pp. 621632. New York: Oxford University Press.Google Scholar
Noble, A. & Jones, C. (2005). Benefits of narrative therapy: Holistic interventions at the end of life. British Journal of Nursing, 14(6), 330333.Google Scholar
Peigne, V., Chaize, M., Falissard, B., et al. (2011). Important questions asked by family members of intensive care unit patients. Critical Care Medicine, 39(6), 13651371.Google Scholar
Pennebaker, J.W. (1989). Confession, inhibition, and disease. In Advances in experimental and social psychology. Berkowitz, L. (ed.), Vol. 22, pp. 211244. New York: Academic Press.Google Scholar
Pennebaker, J.W., Barger, S.D. & Tiebout, J. (1989). Disclosure of traumas and health among Holocaust survivors. Psychosomatic Medicine, 51(5), 577589.Google Scholar
Pennebaker, J.W., Mayne, T.J. & Francis, M.E. (1997). Linguistic predictors of adaptive bereavement. Journal of Personality and Social Psychology, 72, 863871.Google Scholar
Petrie, K.J., Booth, R.J., Pennebaker, J.W., et al. (1995). Disclosure of trauma and immune response to a hepatitis B vaccination program. Journal of Consulting and Clinical Psychology, 63(5), 787792.Google Scholar
Petrie, K.J., Fontanilla, I., Thomas, M.G., et al. (2004). Effect of written emotional expression on immune function in patients with human immunodeficiency virus infection: A randomized trial. Psychosomatic Medicine, 66(2), 272275.Google Scholar
Pochard, F., Azoulay, E., Chevret, S., et al. (2001). Symptoms of anxiety and depression in family members of intensive care unit patients: Ethical hypothesis regarding decision-making capacity. Critical Care Medicine, 29(10), 18931897.Google Scholar
Pollak, K.I., Arnold, R.M. Jeffreys, A.S., et al. (2007). Oncologist communication about emotion during visits with patients with advanced cancer. Journal of Clinical Oncology, 25(36), 57485752.Google Scholar
Prendergast, T.J. & Luce, J.M. (1997). Increasing incidence of withholding and withdrawal of life support from the critically ill. American Journal of Respiratory and Critical Care Medicine, 155(1), 1520.Google Scholar
Prendergast, T.J. & Puntillo, K.A. (2002). Withdrawal of life support: Intensive caring at the end of life. The Journal of the American Medical Association, 288(21), 27322740.Google Scholar
Prigerson, H.G., Maciejewski, P.K., Reynolds, C.F. III, et al. (1995). Inventory of complicated grief: A scale to measure maladaptive symptoms of loss. Psychiatry Research, 59(1–2), 6579.Google Scholar
Rollman, B.L., Belnap, B.H., Mazumdar, S., et al. (2005). A randomized trial to improve the quality of treatment for panic and generalized anxiety disorders in primary care. Archives of General Psychiatry, 62(12), 13321341.Google Scholar
Rollman, B.L., Belnap, B.H., Le Menager, M.S., et al. (2009). The Bypassing the Blues treatment protocol: Stepped collaborative care for treating post-CABG depression. Psychosomatic Medicine, 71(2), 217230.Google Scholar
Schenker, Y., Crowley-Matoka, M., Dohan, D., et al. (2012). I don't want to be the one saying “we should just let him die”: Intrapersonal tensions experienced by surrogate decision makers in the ICU. Journal of General Internal Medicine, 27(12), 16571665.Google Scholar
Schenker, Y., White, D.B., Crowley-Matoka, M., et al. (2013). “It hurts to know . . . and it helps”: Exploring how surrogates in the ICU cope with prognostic information. Journal of Palliative Medicine, 16(3), 243249.Google Scholar
Scheunemann, L.P., McDevitt, M. Carson, S.S., et al. (2011). Randomized, controlled trials of interventions to improve communication in intensive care: A systematic review. Chest, 139(3), 543554.Google Scholar
Siegel, M.D., Hayes, E., Vanderwerker, L.C., et al. (2008). Psychiatric illness in the next of kin of patients who die in the intensive care unit. Critical Care Medicine, 36(6), 17221728.Google Scholar
Snaith, R.P. & Zigmond, A.S. (1986). The hospital anxiety and depression scale. British Medical Journal (Clinical Research edition), 292(6516), 344.Google Scholar
Spitzer, R.L., Kroenke, K. & Williams, J.B. (1999). Validation and utility of a self-report version of PRIME–MD: The PHQ primary care study. Primary Care Evaluation of Mental Disorders. Patient health questionnaire. The Journal of the American Medical Association, 282(18), 17371744.Google Scholar
Sundin, E.C. & Horowitz, M.J. (2002). Impact of Event Scale: Psychometric properties. The British Journal of Psychiatry, 180, 205209.Google Scholar
Sundin, E.C. & Horowitz, M.J. (2003). Horowitz's Impact of Event Scale evaluation of 20 years of use. Psychosomatic Medicine, 65(5), 870876.Google Scholar
Tanner, B.A. (2012). Validity of global physical and emotional SUDS. Applied Psychophysiology Biofeedback, 37(1), 3134.Google Scholar
Thompson, B.T., Cox, P.N. Antonelli, M., et al. (2004). Challenges in end-of-life care in the ICU: Statement of the Fifth International Consensus Conference in Critical Care, Brussels, Belgium, April 2003: Executive summary. Critical Care Medicine, 32(8), 17811784.Google Scholar
Trau, H. C. & Deighton, R. (1999). Inhibition, disclosure and health: Don't simply slash the Gordian knot. Advances in Mind–Body Medicine, 15, 184193.Google Scholar
Truog, R.D., Campbell, M.L., Curtis, J.R., et al. (2008). Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American College of Critical Care Medicine. Critical Care Medicine, 36(3), 953963.Google Scholar
Vig, E.K., Taylor, J.S., Starks, H., et al. (2006). Beyond substituted judgment: How surrogates navigate end-of-life decision making. Journal of the American Geriatrics Society, 54(11), 16881693.Google Scholar
Vig, E.K., Starks, H., Taylor, J.S., et al. (2007). Surviving surrogate decision-making: What helps and hampers the experience of making medical decisions for others. Journal of General Internal Medicine, 22(9), 12741279.Google Scholar
Wendler, D. & Rid, A. (2011). Systematic review: The effect on surrogates of making treatment decisions for others. Annals of Internal Medicine, 154(5), 336346.Google Scholar
White, M. & Epston, D. (1990). Narrative means to therapeutic ends. New York: W.W. Norton.Google Scholar