Establishing code status: are people's decisions truly informed?

Abstract

To the Editor: More people are completing advance directives before they die,1 and a recent study in Oregon indicates that those who document their wishes not to be hospitalized at the end of life have those wishes honored.2 However, it is still common to find frail elderly adults or terminally ill individuals who have not documented or discussed their end-of-life wishes or request full resuscitation efforts, and the numbers of hospitalized individuals undergoing cardiopulmonary resuscitation (CPR) before dying is increasing.3 In contrast, essays and surveys by physicians and other healthcare professionals show a clear preference for not being resuscitated in the face of poor health.4, 5 This discrepancy suggests that there is something that physicians understand about the process and prognosis of resuscitation that is not being effectively communicated. Code status discussions frequently focus on the low success rate (<20% of people survive in-hospital CPR6), details of how the procedure is performed, and sequelae ranging from broken ribs to prolonged mechanical ventilation necessitating family decisions about withdrawal of care. This may not be the most informative approach for people. As aggressive chemotherapy choices and pacemakers placed in frail elderly adults indicate, many people choose to undergo aggressive medical treatment in the face of a fairly dismal prognosis.7 People frequently opt for unpleasant medical interventions if the outcome is a return to meaningful life. CPR allows many people to return to meaningful life but also carries the risk of suffering. This is something physicians know from experience and that multiple studies have corroborated. One study found that 44% of adults with cardiac arrest had return of spontaneous circulation after resuscitation but that almost two-thirds of these individuals did not survive to discharge,8 often undergoing prolonged hospitalization and suffering before death. Another study found that, at hospital discharge, 52% of survivors of cardiac arrest had moderate to severe neurological disability (Cerebral Performance Category > 1).6 Another study examining survivors of cardiac arrest found that 66.3% had moderate to severe neurological disability 6 months after discharge.9 These data provide a different framework for discussion of code status than does focusing on the 20% chance of survival. Furthermore, when people are asked about code status, they are being asked to give permission to withhold potential treatment. Resuscitation is the only medical procedure for which consent not to proceed is needed. Although life-sustaining procedures are not withheld in emergency situations, all other medical procedures require prior consent unless the situation is life threatening. For example, when individuals who have experienced a trauma come into the emergency department needing blood, they receive it without delay, but before elective surgery, informed consent is obtained in case transfusion is needed. CPR should be no different. Code status discussions should communicate to the individual that, although the procedure can be life saving, there are inherent risks and potential for a bad outcome associated with it as well. Shifting the focus to asking for permission to perform CPR, rather than asking an individual to sign a do-not-resuscitate order, can provide a more-balanced consent process. Ultimately, more needs to be known about prognosis before it will be possible to obtain adequate informed consent for a procedure. The Cardiac Arrest Survival Post Resuscitation In-hospital prediction tool10 examines 11 variables to predict the quality of neurological survival of individuals who undergo CPR. This tool can be a resource to help individuals and their families develop realistic expectations and make decisions about further code status and medical care after an arrest. This is a first step toward having a prearrest prediction tool to help guide decision-making during code status discussions. Further research is needed in this area. Physicians witness not just the brutality of resuscitation, but also the suffering of surviving it. Discussion of code status should not just focus on a good or bad death experience, but also on good or bad survival. As with any procedure, informed consent should be obtained after reviewing the risks and benefits of the procedure, including the potentially bad outcomes, and offering the alternative, which is to allow natural death. Switching from an opt-out model to an opt-in model would be an important first step in communicating the reality of this procedure to people. Conflict of Interest: The editor in chief has reviewed the conflict of interest checklist provided by the author and has determined that the author has no financial or any other kind of personal conflicts with this paper. Author Contributions: Rebecca J. Stetzer is responsible for the entire content of this paper. Sponsor's Role: None.