EDITORIALS Guiding the Guiders Recognizing Surrogates’ Needs and Advancing Communication in the Intensive Care Unit Giora Netzer1,2 and Mark D. Siegel3,4 1 Division of Pulmonary and Critical Care Medicine and 2Department of Epidemiology and Public Health, University of Maryland School of Medicine, Baltimore, Maryland; and 3Department of Internal Medicine and 4Section of Pulmonary, Critical Care & Sleep Medicine, Yale School of Medicine, New Haven, Connecticut

Most end-of-life decisions in the intensive care unit (ICU) are not made by the patient, but rather by family members serving as surrogates (1). We place immense responsibility on these loved ones, many of whom are suffering significant physical and psychological morbidity (2). Current recommendations for communicating with surrogates are largely based on expert opinion. The views of clinician and expert stakeholders are generally well known and reflected in professional society position statements (3), reviews, and editorials. But as we advance in our approach to communicating with surrogates, it becomes increasingly clear that improved practice requires a better understanding of surrogates’ views and needs. In this respect, the study by Anderson and colleagues in this month’s issue of AnnalsATS (pp. 142–152) contributes significantly to the literature (4). This multicenter study of the loved ones of ICU patients, nested within research performed by the National Heart, Lung, and Blood Institute Acute Respiratory Distress Syndrome Clinical Trials Network, surveyed the family members of severely ill, mechanically ventilated patients at high risk of dying and focused on surrogates’ preferences related to discussing prognosis. A large proportion (75%) of surrogates approached participated in the study. The authors carefully sought participation of a broad range of demographics to maximize generalizability, although as in many studies, minorities appear to have been underrepresented.

Some of the surrogate recommendations recorded echo prior studies and guidelines, such as the desire for early and regular prognostic communication. Surrogates also appear to prefer that clinicians actively assess whether families understand key issues, rather than simply provide time for questions. Some perspectives also endorse alternate or complementary approaches to communication, such as frequent input from nonphysician team members and informal discussions to complement formal family meetings. Practical efforts, such as looking at radiographs together, providing straightforward explanations, and using pictures, may help foster surrogate understanding. Perhaps most intriguing were the areas in which physicians and surrogates diverged. Most physicians spontaneously identified discussing prognosis regularly as important, though only 43% of surrogates did so. Should physicians feel so confident in the need to continuously revisit prognosis? Data indicate that physicians are anxious and uncertain of their ability (5), and in the ICU, they are wrong about survival about half the time (6). Family members may perceive themselves to be comfortable with numbers; the majority of surrogates spontaneously volunteered that numeric estimates may be helpful to families. Yet, in addition to the third of surrogates who did not spontaneously endorse the need for numeric estimates, this was the one area in which surrogates were not in agreement with clinicians and experts. Is this group of

surrogates cognitively overwhelmed, simply not wanting to hear prognosis, and feeling helpless (7)? When we do provide numbers to family members, we should consider the study by Zier and colleagues (8), in which surrogates in three hospital ICUs were given prognostic statements and asked to interpret them. When presented with the statement “He has a 5% chance of surviving,” half the surrogates thought the chances of survival were 15% or greater, one-quarter thought the probability of survival was 40% or greater, and at least one participant thought the chance of survival was 95%. Unfortunately, providing prognostic information with qualitative rather than quantitative data does not seem to help (9). This unrealistic hopefulness is known as optimism bias, which pervades our thinking, whether it be in estimating our risk of getting in a traffic accident or in how we construct our advanced directives (10, 11), and it is likely to persist even in the setting of optimal prognostic communication. Additional factors that likely contribute to surrogates’ perception of prognosis include race, religious beliefs, and their own observations (12, 13). These are likely to alter surrogates’ beliefs in ways that may not be influenced by optimal communication. Readers of this interesting study may be left wondering how to use the opinions elicited from clinician stakeholders. Although undoubtedly helpful to consider, we would caution against basing recommendations on clinicians’ opinions,

(Received in original form January 13, 2015; accepted in final form January 14, 2015 ) Correspondence and requests for reprints should be addressed to Giora Netzer, M.D., M.S.C.E., Division of Pulmonary and Critical Care Medicine, University of Maryland School of Medicine, 110 S. Paca St., 2nd Floor, Baltimore, MD 21201. E-mail: [email protected] Ann Am Thorac Soc Vol 12, No 2, pp 237–238, Feb 2015 Copyright © 2015 by the American Thoracic Society DOI: 10.1513/AnnalsATS.201501-028ED Internet address: www.atsjournals.org

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EDITORIALS pending further study, especially as these clinicians represent the same population seeking the guidance the authors propose to provide. We are more persuaded by the opinions of the surrogates surveyed, which should help inform future work to optimize clinician–surrogate communication. Large-scale studies implementing what clinicians and experts think is vital for bettering communication have not resulted in the anticipated improved outcomes of family satisfaction, family-perceived quality of death, or length of stay at the end of life (1, 14). Significant uncertainty pervades why these large-scale trials yielded such results, but we must consider the possibility that a concerted focus on eliciting and meeting surrogates’ needs is the essential component needed to improve communication (15). Identifying the needs of surrogate decision makers may lead to the creation of effective communication tools. Examples that are already available include pamphlets and decision-making aids (16, 17). Additional research should identify which tool or tools work in different cultural contexts.

Pending further discovery, simple steps are already available to foster improved communication between clinicians and surrogates For example, we believe families should be routinely included in bedside rounds. Their inclusion supports surrogates’ wishes for more frequent, informal discussion. This practice has been part of pediatric culture for some time, a large body of data supports its benefits, and guidelines have backed family inclusion on rounds for nearly a decade (3). Participation on rounds improves family satisfaction with frequency of communication and support during decision making and may decrease family stress. This approach also increases both nursing presence on rounds and job satisfaction (18) and may improve medical education (19). The presence of families on rounds provides clinicians with a simple, empowering, and convenient opportunity to review key data; for example, by looking at radiographs together. Within the context of evidence for family-centered rounds, this is a safe, nonthreatening, and effective way to communicate prognosis and address

References 1 Covinsky KE, Goldman L, Cook EF, Oye R, Desbiens N, Reding D, Fulkerson W, Connors AF Jr, Lynn J, Phillips RS; SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. The impact of serious illness on patients’ families. JAMA 1994;272:1839–1844. 2 Netzer G, Sullivan DR. Recognizing, naming, and measuring a family intensive care unit syndrome. Ann Am Thorac Soc 2014;11:435–441. 3 Davidson JE, Powers K, Hedayat KM, Tieszen M, Kon AA, Shepard E, Spuhler V, Todres ID, Levy M, Barr J, et al.; American College of Critical Care Medicine Task Force 2004-2005, Society of Critical Care Medicine. 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. Crit Care Med 2007;35: 605–622. 4 Anderson WG, Cimino JW, Ernecoff NC, Ungar A, Shotsberger KJ, Pollice LA, Buddadhumaruk P, Carson SS, Curtis JR, Hough CL et al. A Multicenter Study of Key Stakeholders’ Perspectives on Communicating with Surrogates about Prognosis in ICUs. Ann Am Thorac Soc 2015;12:142–152. 5 Christakis NA, Iwashyna TJ. Attitude and self-reported practice regarding prognostication in a national sample of internists. Arch Intern Med 1998;158:2389–2395. 6 Meadow W, Pohlman A, Frain L, Ren Y, Kress JP, Teuteberg W, Hall J. Power and limitations of daily prognostications of death in the medical intensive care unit. Crit Care Med 2011;39:474–479. 7 Sullivan DR, Liu X, Corwin DS, Verceles AC, McCurdy MT, Pate DA, Davis JM, Netzer G. Learned helplessness among families and surrogate decision-makers of patients admitted to medical, surgical, and trauma ICUs. Chest 2012;142:1440–1446. 8 Zier LS, Sottile PD, Hong SY, Weissfield LA, White DB. Surrogate decision makers’ interpretation of prognostic information: a mixedmethods study. Ann Intern Med 2012;156:360–366.

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surrogate stakeholders’ needs. Further studies should include such interventions within the context of a multifaceted approach to working with families in the ICU. This important study by Anderson and colleagues contributes vital first steps toward improving communication of prognosis in the ICU, particularly by eliciting the key perspectives of patients’ families. Ongoing family-centered research in the ICU, using both qualitative and quantitative techniques, is essential to improving and promoting family-centered care. Trials comparing specific, standardized interventions should be initiated to identify the best ways to convey prognostic estimates in the context of end-of-life care. As we envision future research, we should look on this study, nested within multicenter randomized trials, as a favorable harbinger, seeking ways to support families as we strive to improve the care of those they love. n Author disclosures are available with the text of this article at www.atsjournals.org.

9 Lee Char SJ, Evans LR, Malvar GL, White DB. A randomized trial of two methods to disclose prognosis to surrogate decision makers in intensive care units. Am J Respir Crit Care Med 2010;182:905–909. 10 Halpern SD. Shaping end-of-life care: behavioral economics and advance directives. Semin Respir Crit Care Med 2012;33:393–400. 11 DeJoy DM. The optimism bias and traffic accident risk perception. Accid Anal Prev 1989;21:333–340. 12 Boyd EA, Lo B, Evans LR, Malvar G, Apatira L, Luce JM, White DB. “It’s not just what the doctor tells me:” factors that influence surrogate decision-makers’ perceptions of prognosis. Crit Care Med 2010;38: 1270–1275. 13 Siegel MD, Prigerson HG. The perception gap: race, religion, and prognosis in the ICU. Chest 2010;138:8–9. 14 Curtis JR, Nielsen EL, Treece PD, Downey L, Dotolo D, Shannon SE, Back AL, Rubenfeld GD, Engelberg RA. Effect of a qualityimprovement intervention on end-of-life care in the intensive care unit: a randomized trial. Am J Respir Crit Care Med 2011;183: 348–355. 15 Azoulay E, Siegel MD. Self-efficacy approaches to improving end-oflife care for the critically ill: ineffective, insufficient, or inconclusive? Am J Respir Crit Care Med 2011;183:288–290. 16 Lautrette A, Darmon M, Megarbane B, Joly LM, Chevret S, Adrie C, Barnoud D, Bleichner G, Bruel C, Choukroun G, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med 2007;356:469–478. 17 Cox CE, Lewis CL, Hanson LC, Hough CL, Kahn JM, White DB, Song MK, Tulsky JA, Carson SS. Development and pilot testing of a decision aid for surrogates of patients with prolonged mechanical ventilation. Crit Care Med 2012;40:2327–2334. 18 Davidson JE. Family presence on rounds in neonatal, pediatric, and adult intensive care units. Ann Am Thorac Soc 2013;10:152–156. 19 Sandhu AK, Amin HJ, McLaughlin K, Lockyer J. Leading educationally effective family-centered bedside rounds. J Grad Med Educ 2013;5: 594–599.

AnnalsATS Volume 12 Number 2 | February 2015

Guiding the guiders. Recognizing surrogates' needs and advancing communication in the intensive care unit.

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