Clinical Investigations

Storytelling in the Early Bereavement Period to Reduce Emotional Distress Among Surrogates Involved in a Decision to Limit Life Support in the ICU: A Pilot Feasibility Trial*

Barnato, Amber E. MD, MPH, MS¹; Schenker, Yael MD, MAS²; Tiver, Greer MPH²; Dew, Mary Amanda PhD³; Arnold, Robert M. MD²; Nunez, Eduardo R. MD⁴; Reynolds, Charles F. III MD³

Author Information

¹Section of Decision Sciences, Division of General Internal Medicine, Department of Medicine, University of Pittsburgh, Pittsburgh, PA.

²Section of Palliative Care and Medical Ethics, Division of General Internal Medicine, Department of Medicine, University of Pittsburgh, Pittsburgh, PA.

³Department of Psychiatry, University of Pittsburgh, Pittsburgh, PA.

⁴Department of Medicine, Brown University School of Medicine, Providence, RI.

*See also p. 134.

Clinical Trial Registration: NCT01902784.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s website (http://journals.lww.com/ccmjournal).

Supported, in part, by the National Palliative Care Research Center (NPCRC) pilot and exploratory grant program and the National Institutes of Health (NIH grants P30 MH090333 [Advanced Centers for Interventions and Services Research] and UL1 TR000005 [Clinical and Translational Science Institute]). The NPCRC and NIH had no role in the design, analysis, or decision to submit the article for publication. The content is solely the responsibility of the authors and does not necessarily represent the official views of NPCRC or the NIH.

Dr. Barnato served as a board member for the Society for Medical Decision Making (past member of Society for Medical Decision Making [SMDM] Board–reimbursed for travel), and received support for article research from the NPCRC. Her institution received grant support from the NPCRC and the NIH. Dr. Schenker received support from an NIH mentored career development award (KL2TR000146) and the University of Pittsburgh Department of Medicine’s Junior Scholar Award. Dr. Tiver received support for article research from the NPCRC. Dr. Dew received support for article research from the NPCRC and the NIH. Dr. Nunez received support from the Clinical Scientist Training Program at the University of Pittsburgh School of Medicine. Dr. Reynolds received support for article research from the NPCRC and the NIH, served as a board member for the American Association of Geriatric Psychiatry (editorial review board fee), and is employed by a University of Pittsburgh Medical Center (UPMC) Endowment in Geriatric Psychiatry (supports the endowed professorship). His institution received grant support from the NIMH, National Institute on Aging, National Center for Minority Health Disparities, National Heart Lung and Blood Institute, Center for Medicare and Medicaid Services, Patient Centered Outcomes Research Institute, John A. Hartford Foundation, American Foundation for Suicide Prevention, Commonwealth of Pennsylvania, Clinical and Translational Science Institute, and NPCRC. His institution receives support from the American Association for Geriatric Psychiatry (for services as associate editor). His institution received royalties from Psychometric analysis of the Pittsburgh Sleep Quality Index and PRO10050447 (co-inventor). His institution received other support from Bristol Meyers Squibb, Forrest Labs, Lily, and Pfizer (provide pharmaceutical supplies for NIH-sponsored work [The pharmaceutical companies play no role in the design, analysis, or reporting of my data in peer reviewed journals]). Dr. Arnold has disclosed that he does not have any potential conflicts of interest.

For information regarding this article, E-mail: [email protected]

Critical Care Medicine 45(1):p 35-46, January 2017. | DOI: 10.1097/CCM.0000000000002009

Abstract

Objectives:

Surrogate decision makers involved in decisions to limit life support for an incapacitated patient in the ICU have high rates of adverse emotional health outcomes distinct from normal processes of grief and bereavement. Narrative self-disclosure (storytelling) reduces emotional distress after other traumatic experiences. We sought to assess the feasibility, acceptability, and tolerability of storytelling among bereaved surrogates involved in a decision to limit life support in the ICU.

Design:

Pilot single-blind trial.

Setting:

Five ICUs across three hospitals within a single health system between June 2013 and November 2014.

Subjects:

Bereaved surrogates of ICU patients.

Interventions:

Storytelling and control conditions involved printed bereavement materials and follow-up assessments. Storytelling involved a single 1- to 2-hour home or telephone visit by a trained interventionist who elicited the surrogate’s story.

Measurements and Main Results:

The primary outcomes were feasibility (rates of enrollment, intervention receipt, 3- and 6-mo follow-up), acceptability (closed and open-ended end-of-study feedback at 6 mo), and tolerability (acute mental health services referral). Of 53 eligible surrogates, 32 (60%) consented to treatment allocation. Surrogates’ mean age was 55.5 (sd, 11.8), and they were making decisions for their parent (47%), spouse (28%), sibling (13%), child (3%), or other relation (8%). We allocated 14 to control and 18 to storytelling, 17 of 18 (94%) received storytelling, 14 of 14 (100%) and 13 of 14 (94%) control subjects and 16 of 18 (89%) and 17 of 18 (94%) storytelling subjects completed their 3- and 6-month telephone assessments. At 6 months, nine of 13 control participants (69%) and 16 of 17 storytelling subjects (94%) reported feeling “better” or “much better,” and none felt “much worse.” One control subject (8%) and one storytelling subject (6%) said that the study was burdensome, and one control subject (8%) wished they had not participated. No subjects required acute mental health services referral.