Patient Preferences and Surrogate Decision Making in Neuroscience Intensive Care Units

Abstract

In the neuroscience intensive care unit (NICU), most patients lack the capacity to make their own preferences known. This fact leads to situations where surrogate decision makers must fill the role of the patient in terms of making preference-based treatment decisions, oftentimes in challenging situations where prognosis is uncertain. The neurointensivist has a large responsibility and role to play in this shared decision making process. This review covers how NICU patient preferences are determined through existing advance care documentation or surrogate decision makers and how the optimum roles of the physician and surrogate decision maker are addressed. We outline the process of reaching a shared decision between family and care team and describe a practice for conducting optimum family meetings based on studies of ICU families in crisis. We review challenges in the decision making process between surrogate decision makers and medical teams in neurocritical care settings, as well as methods to ameliorate conflicts. Ultimately, the goal of shared decision making is to increase knowledge amongst surrogates and care providers, decrease decisional conflict, promote realistic expectations and preference-centered treatment strategies, and lift the emotional burden on families of neurocritical care patients.

Primary Care Physician Involvement in Shared Decision Making for Critically Ill Patients and Family Satisfaction with Care

“…21 Thus, most medical decisions in ICUs that involve value judgments (ie, changing a patient's code status or deciding to limit life support for a patient with poor prognosis) put families and surrogate decision makers in the difficult position of attempting to respect a patient's perceived wishes, when such wishes may not have been previously discussed. 22 In this sense, PCPs may play a more important role for patients admitted to the ICU than in other hospital units because their longitudinal relationships with their patients can give them unique perspectives regarding patient values and preferences when uncertainty exists in critical situations (especially when patients themselves lack decision making capacity). PCPs may also provide reassurance and confidence in the ICU team for families meeting inpatient clinicians for the first time and still building trust.…”

A few realistic questions raised by organ retrieval in the intensive care unit

“…While the French law authorizing such practices was passed in 2005, the prevalence of advance directives and designated surrogate persons remains low (53). When patients in the ICU lack decision-making capacity, WhWd discussions are often shared between physicians, nurses, and family members or relatives acting as surrogates and representing the patient's values and preferences (67,68). Once a WhWd decision has been made, a physician who has no direct knowledge of the deceased's wishes must question the relatives about a possible consent/opposition to organ or tissue donation expressed during the patient's lifetime.…”

The ‘ouR‐HOPE’ approach for ethics and communication about neonatal neurological injury

“…Partnership refers to an approach where there is a genuine collaborative discussion about the goals of care, and where such collaboration is reflected in the communication and the style of the clinician (e.g. shared decision‐making) . A partnered approach recognizes the valuable knowledge and experience brought by parents in discussions at the bedside .…”

“…A partnership approach should also be sensitive to strategies that help empower parents and make them feel more comfortable, including feeling that their values and beliefs are respected and built on to support their coping abilities . Clinicians can prepare for meetings with parents using some of the available resources to engage with parents in the neonatal context, or those suggested for engaging with surrogate decision makers . Ethics consultation could also be helpful.…”