Abstract
BACKGROUND
Although numerous studies have addressed external factors associated with difficulty in surrogate decision making, intrapersonal sources of tension are an important element of decision making that have received little attention.
OBJECTIVE
To characterize key intrapersonal tensions experienced by surrogate decision makers in the intensive care unit (ICU), and explore associated coping strategies.
DESIGN
Qualitative interview study.
PARTICIPANTS
Thirty surrogates from five ICUs at two hospitals in Pittsburgh, Pennsylvania, who were actively involved in making life-sustaining treatment decisions for a critically ill loved one.
APPROACH
We conducted in-depth, semi-structured interviews with surrogates, focused on intrapersonal tensions, role challenges, and coping strategies. We analyzed transcripts using constant comparative methods.
KEY RESULTS
Surrogates experience significant emotional conflict between the desire to act in accordance with their loved one’s values and 1) not wanting to feel responsible for a loved one’s death, 2) a desire to pursue any chance of recovery, and 3) the need to preserve family well-being. Associated coping strategies included 1) recalling previous discussions with a loved one, 2) sharing decisions with family members, 3) delaying or deferring decision making, 4) spiritual/religious practices, and 5) story-telling.
CONCLUSIONS
Surrogates’ struggle to reconcile personal and family emotional needs with their loved ones’ wishes, and utilize common coping strategies to combat intrapersonal tensions. These data suggest reasons surrogates may struggle to follow a strict substituted judgment standard. They also suggest ways clinicians may improve decision making, including attending to surrogates’ emotions, facilitating family decision making, and eliciting potential emotional conflicts and spiritual needs.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
REFERENCES
Angus DC, et al. Use of intensive care at the end of life in the United States: an epidemiologic study. Crit Care Med. 2004;32(3):638–43.
Thompson BT, 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(8):1781–4.
Carlet J, 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. Intensive Care Med. 2004;30(5):770–84.
Vig EK, et al. Beyond substituted judgment: how surrogates navigate end-of-life decision-making. J Am Geriatr Soc. 2006;54(11):1688–93.
Berger JT, DeRenzo EG, Schwartz J. Surrogate decision making: reconciling ethical theory and clinical practice. Ann Intern Med. 2008;149(1):48–53.
Torke AM, Alexander GC, Lantos J. Substituted judgment: the limitations of autonomy in surrogate decision making. J Gen Intern Med. 2008;23(9):1514–7.
Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154(5):336–46.
Tilden VP, et al. Decisions about life-sustaining treatment. Impact of physicians' behaviors on the family. Arch Intern Med. 1995;155(6):633–8.
Limerick MH. The process used by surrogate decision makers to withhold and withdraw life-sustaining measures in an intensive care environment. Oncol Nurs Forum. 2007;34(2):331–9.
Braun UK, et al. Voices of African American, Caucasian, and Hispanic surrogates on the burdens of end-of-life decision making. J Gen Intern Med. 2008;23(3):267–74.
Apatira L, et al. Hope, truth, and preparing for death: perspectives of surrogate decision makers. Ann Intern Med. 2008;149(12):861–8.
Lind R, et al. Family members' experiences of "wait and see" as a communication strategy in end-of-life decisions. Intensive Care Med. 37(7):1143-50.
Radwany S, et al. End-of-life decision making and emotional burden: placing family meetings in context. Am J Hosp Palliat Care. 2009;26(5):376–83.
Vig EK, et al. Surviving surrogate decision-making: what helps and hampers the experience of making medical decisions for others. J Gen Intern Med. 2007;22(9):1274–9.
Lautrette A, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med. 2007;356(5):469–78.
Mitchell SL, Tetroe J, O'Connor AM. A decision aid for long-term tube feeding in cognitively impaired older persons. J Am Geriatr Soc. 2001;49(3):313–6.
Kryworuchko J. Understanding the Options: Planning care for critically ill patients in the Intensive Care Unit; 2009: http://decisionaid.ohri.ca/docs/das/Critically_Ill_Decision_Support.pdf. Accessed 18 July 2012.
Peigne V, et al. Important questions asked by family members of intensive care unit patients. Crit Care Med. 2011;39(6):1365–71.
Azoulay E, et al. Impact of a family information leaflet on effectiveness of information provided to family members of intensive care unit patients: a multicenter, prospective, randomized, controlled trial. Am J Respir Crit Care Med. 2002;165(4):438–42.
Scheunemann LP, et al. Randomized, controlled trials of interventions to improve communication in intensive care: a systematic review. Chest. 2011;139(3):543–54.
Murphy P, et al. Description of the SUPPORT intervention. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. J Am Geriatr Soc. 2000;48(5 Suppl):S154–61.
Jezewski MA. Do-not-resuscitate status: conflict and culture brokering in critical care units. Heart Lung. 1994;23(6):458–65.
Kvale S. Interviews: An Introduction to Qualitative Research Interviewing. Thousand Oaks, CA: Sage; 1996.
Charmaz K. Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. London: Sage Publications; 2006.
Grbich C. Qualitative Data Analysis: An Introduction. London: Sage Publications; 2007.
Wiegand D. In their own time: the family experience during the process of withdrawal of life-sustaining therapy. J Palliat Med. 2008;11(8):1115–21.
Azoulay E, et al. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med. 2005;171(9):987–94.
White DB, et al. Expanding the paradigm of the physician's role in surrogate decision-making: an empirically derived framework. Crit Care Med. 2010;38(3):743–50.
Braun UK, Naik AD, McCullough LB. Reconceptualizing the experience of surrogate decision making: reports vs genuine decisions. Ann Fam Med. 2009;7(3):249–53.
Billings JA, Krakauer EL. On patient autonomy and physician responsibility in end-of-life care. Arch Intern Med. 171(9):849-53.
Quill TE, Holloway R. Time-limited trials near the end of life. JAMA. 306(13):1483-4.
Acknowledgements
Funders
Dr. Schenker was supported by a Junior Faculty Career Development Award from the National Palliative Care Research Center and by Award Number KL2 RR024154 from the National Center for Research Resources. Dr. White was supported by the National Heart, Lung, and Blood Institute 1R01HL094553-01. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Center for Research Resources or the National Institutes of Health.
Prior Presentations
This work was presented in an earlier form at the Fifth Annual Kathleen M. Foley Palliative Care Retreat and Research Symposium in Quebec, Canada in October, 2011.
Conflict of Interest
The authors declare that they do not have a conflict of interest.
Author information
Authors and Affiliations
Corresponding author
Electronic supplementary material
Below is the link to the electronic supplementary material.
ESM 1
(DOC 31 kb)
Rights and permissions
About this article
Cite this article
Schenker, Y., Crowley-Matoka, M., Dohan, D. et al. 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. J GEN INTERN MED 27, 1657–1665 (2012). https://doi.org/10.1007/s11606-012-2129-y
Received:
Revised:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11606-012-2129-y