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Journal of General Internal Medicine

, Volume 27, Issue 12, pp 1657–1665 | Cite as

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

  • Yael Schenker
  • Megan Crowley-Matoka
  • Daniel Dohan
  • Greer A. Tiver
  • Robert M. Arnold
  • Douglas B. White
Original Research

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.

KEY WORDS

decision making end of life care ethics intensive care 

Notes

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.

Supplementary material

11606_2012_2129_MOESM1_ESM.doc (31 kb)
ESM 1 (DOC 31 kb)

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Copyright information

© Society of General Internal Medicine 2012

Authors and Affiliations

  • Yael Schenker
    • 1
  • Megan Crowley-Matoka
    • 2
  • Daniel Dohan
    • 3
  • Greer A. Tiver
    • 1
  • Robert M. Arnold
    • 1
  • Douglas B. White
    • 4
  1. 1.Division of General Internal Medicine, Section of Palliative Care and Medical EthicsUniversity of PittsburghPittsburghUSA
  2. 2.Feinberg School of MedicineNorthwestern UniversityEvanstonUSA
  3. 3.Institute for Health Policy StudiesUniversity of CaliforniaSan FranciscoUSA
  4. 4.Clinical Research, Investigation and Systems Modeling of Acute Illness (CRISMA) Center, Department of Critical Care MedicineUniversity of PittsburghPittsburghUSA

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