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.
OBJECTIVE
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.


METHODS
Pilot single-blind trial.


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


METHODS
Bereaved surrogates of ICU patients.


METHODS
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.


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.


CONCLUSIONS
A clinical trial of storytelling in this study population is feasible, acceptable, and tolerable.
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.
Amber E
AE
Barnato
Yael
Y
Schenker
Greer
G
Tiver
Mary Amanda
MA
Dew
Robert M
RM
Arnold
Eduardo R
ER
Nunez
Charles F
CF
Reynolds
D001601:Bereavement; D016022:Case-Control Studies; D003657:Decision Making; D005066:Euthanasia, Passive / Q000523:psychology*; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D007362:Intensive Care Units; D008297:Male; D008875:Middle Aged; D033262:Narration; D010414:Pennsylvania; D010865:Pilot Projects; D019727:Proxy / Q000523:psychology*; D016037:Single-Blind Method; D013315:Stress, Psychological / Q000517:prevention & control*