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
Division of General Internal Medicine, Section of Palliative Care and Medical Ethics, University of Pittsburgh, 230 McKee Place, Suite 600, Pittsburgh, PA, 15213, USA, .Journal of General Internal Medicine (Impact Factor: 3.42). 07/2012; 27(12). DOI: 10.1007/s11606-012-2129-y
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.
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ABSTRACT: Abstract Background: Surrogates of critically ill patients in the intensive care unit (ICU) want honest prognostic information, but they also want to hear good news. There has been little examination of how surrogates navigate these dual needs or how clinicians should respond. Objective: The aim of this study was explore how surrogates in the ICU experience and cope with prognostic information and describe their recommendations for clinicians. Methods: We conducted a qualitative interview study with 30 surrogates facing life-sustaining treatment decisions in five ICUs in Pittsburgh, Pennsylvania. In-depth, semi-structured interviews with surrogates in the ICU focused on general experiences, emotional needs, informational needs, and recommendations for clinicians. We inductively analyzed transcripts for key themes using constant comparative methods. Results: Surrogates experience a tension between wanting to know what to expect and needing to remain hopeful. This tension underlies their experience receiving prognostic information and may lead to behaviors that allow continued hope in the face of bad news, including: 1) focusing on small details rather than the big picture, 2) relying on gut instincts or personal beliefs about the patient, 3) seeking more positive prognostic information from other sources, and, for a minority, 4) avoiding or disbelieving prognostic information. Surrogates emphasize the importance of frequent communication and call on physicians to gently help them prepare for the worst and hope for the best. Conclusions: Surrogates in the ICU experience conflicting emotional and informational needs. They describe behaviors that give the appearance of avoiding bad news while simultaneously asking physicians to help them cope with prognostic information.
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ABSTRACT: Purpose: This study aimed to characterize whether and how the option of a treatment trial is discussed with surrogates in intensive care units. Materials and methods: We audio-recorded 72 family conferences for 72 patients at high risk for death or severe functional impairment in 5 intensive care units in San Francisco, California. We analyzed transcripts to develop a coding framework for whether and how trials were discussed. Results: Trials were offered in 15% of conferences. We identified 2 types: (1) time-limited trials, defined as continuing all intensive, life-sustaining treatments, with a plan to reassess after a defined time period based on prespecified clinical milestones, and (2) symptom-limited trials, defined as using basic medical care aimed at survival (rather than purely comfort-focused treatment) once ventilatory support is withdrawn, with a plan to reassess based on patient symptoms. Clinicians frequently did not inform surrogates about key elements of the trial such as criteria by which the effectiveness of the trial would be evaluated and possible next steps based on trial results. Conclusions: In this cohort of critically ill patients, trials were infrequently and incompletely discussed. Additional work is needed to improve communication about treatment trials and evaluate their impact on patient and family outcomes.
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ABSTRACT: Respect for patient autonomy is highly valued in American society and in nursing professional codes of ethics. US law protects the right of patients to self-determination in health care decisions. Advanced practice registered nurses must be able to identify patients who are not competent to make these decisions and the surrogates who will make decisions in their place. Advance planning with patients and providing optimal support for their surrogates are part of individualized, total-patient care and key to promoting best outcomes for patients and their families who are experiencing extremely difficult choices and significant life transitions.
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