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Mrs H, an 85-year-old woman with atrial fibrillation, congestive heart failure, and hemiplegia from a previous stroke, died in the intensive care unit (ICU) after a decision to withdraw mechanical ventilation. In recounting this decision, her daughter, MP, reported that it was the last in a series of difficult treatment choices that began months earlier. She participated in decisions to admit her mother to a nursing home because of recurrent falls, transfer her to the community hospital because of mental status changes, move her from the community hospital to a referral hospital when a stroke was diagnosed, and place a feeding tube when she failed a swallowing test. By the time she was admitted to the ICU with pneumonia, Mrs H had been through so much that “she was not my mother anymore,” MP said. Poignantly, MP explained that the decision to withdraw life-sustaining treatment was easier than the earlier decision—made on the hospital ward—to permit the feeding tube. She knew her mother would never have wanted the feeding tube but said that she had felt pressured by the neurologist’s recommendation to “give her a chance.”
Research on surrogate decision making has focused on decisions in the ICU. Studies have documented surrogate distress and adverse mental health outcomes associated with participation in ICU decisions about life-sustaining treatment,1,2 and interventions to support surrogate decision making have focused on improving the quality of communication with families in the ICU.3 For example, frequent and structured family meetings improve patient and family outcomes and are now recommended by professional society guidelines.
Yet, as Mrs H’s story illustrates, family involvement in treatment decisions for older adults often evolves over months or even years before a patient’s admission to the ICU. A decision to withdraw life-sustaining treatment may represent the last of many difficult choices that include surrogates to varying degrees. Earlier decisions may affect the overall course of an illness, the issues faced at the end of life, and the level of surrogate distress. Until now, the prevalence and significance of these “upstream” decisions have received scant attention in surrogate decision-making research.
The article by Torke et al4 contributes to this literature by describing a fuller scope of surrogate decision making in the hospital. Widening their lens beyond the ICU, the authors find that major medical decisions for elderly patients are frequent across hospital settings, and nearly half of these decisions involve surrogates. In their 2-hospital study, surrogate decision making was more common in ICUs. Yet, a surprising 43.4% of decisions on the medical wards were described by physicians as made by surrogates or shared between surrogates and patients. Furthermore, surrogate involvement in decision making for older adults was associated with longer and more complex hospital stays and higher mortality.
These provocative findings suggest the need for a broader conceptual model of surrogate decision making in the hospital. Common and important upstream decisions represent opportunities to (1) ensure that approaches to surrogate decision making reflect patient preferences; (2) practice triadic communication and decision making, involving clinicians, patients, and surrogates; and (3) counter decision myopia by contextualizing decisions in the patient’s life course rather than simply the condition at hand. Below, we briefly describe each recommendation.
Given the frequency of treatment decisions in the study by Torke et al,4 we argue that ascertaining decision-making preferences should be routine for all older hospitalized patients on admission. As previous commentators have noted, “patients do not value autonomy equally” or define it the same way.5 Thus, decision-making preferences and priorities may vary widely and should not be assumed. Some patients prefer to share decisions with family members or defer decisions to surrogates. Others hope to maintain control of their own decisions for as long as possible and/or fear burdening loved ones with this responsibility. Some patients choose to give surrogates leeway to make decisions based on what they think is best in a given clinical situation. Others want their advance directives to be followed exactly.
Physicians often ask patients, “Who would you want to make decisions for you if you were no longer able to make them yourself?” However, this question fails to account for the diversity or complexity of decision-making preferences. By asking, “Who would you like to be involved in decisions about your care?” and “How would you like us to involve them?” physicians may learn more about patients’ priorities. Similarly, asking, “How much flexibility would you like your decision maker(s) to have in following your prior medical wishes?” can provide important information about patients’ goals.6 Clearly documenting these preferences in the electronic health record provides contextual information not captured on advance directives and may be particularly helpful when a patient subsequently loses capacity and/or multiple clinicians are involved in hospital care.
More than half of the decisions involving surrogates identified by Torke et al4 were made jointly by surrogates and patients. These decisions often involve triadic communication between patients, families, and clinicians. Leading such discussions can be a challenge, particularly when high-stakes or complex treatment options are being considered. Physicians must elicit the preferences of patients who may not be able to communicate easily due to illness, meet family needs, attend to emotions, and address potential disagreements or conflicts. Many of the communication skills taught in the ICU—such as how to help surrogates understand their role for an incapacitated patient—may not directly apply. Providing training for physicians in how to engage patients and families in decisions together—particularly during less formal but more frequent opportunities for communication in non-ICU hospital settings—may help to improve the quality of upstream surrogate decision making. These communication skills are a core competency and should be evaluated as a part of maintaining physician certification.
The finding by Torke et al4 that surrogate decisions within the first 48 hours of admission are associated with higher-intensity subsequent care and higher subsequent mortality highlights the importance of contextualizing these decisions within a patient’s overall illness trajectory and goals rather than focusing narrowly on the acute condition at hand. Countering decision myopia—the tendency to consider near-term decisions and outcomes rather than longer term ones—may be a novel strategy for reducing the prevalence and burden of surrogate decision making in the ICU.7,8 For example, in Mrs H’s case, focusing on the goals of treatment in light of her wishes, explicitly acknowledging the inevitability of mortality, and supporting family conversations about ways of dying may have led to different choices, a different manner of death for Mrs H, and a less burdensome and haunting experience for her daughter.
In short, understanding the full scope of surrogate decision making in the hospital is an important first step in addressing adverse outcomes associated with these decisions. These findings are a call to move upstream and develop strategies to support surrogate decisions before older adults reach the ICU.
Corresponding Author: Yael Schenker, MD, MAS, Division of General Internal Medicine, Department of Medicine, University of Pittsburgh, 230 McKee Pl, Ste 600, Pittsburgh, PA 15213 (firstname.lastname@example.org).
Published Online: January 20, 2014. doi:10.1001/jamainternmed.2013.13284.
Conflict of Interest Disclosures: None reported.
Funding/Support: This study was support by grant KL2TR000146 from the National Center for Advancing Translational Sciences of the National Institutes of Health and by the Junior Scholar Award from the Department of Medicine, University of Pittsburgh.
Role of the Sponsor: The funding source had no role in the design and conduct of the study; collection, management, analysis, or interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Disclaimer: The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Schenker Y, Barnato A. Expanding Support for “Upstream” Surrogate Decision Making in the Hospital. JAMA Intern Med. 2014;174(3):377–379. doi:10.1001/jamainternmed.2013.13284
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