The emergency department is a setting in which medicine is practiced with limited time and information and where relationships with patients are stressed and fleeting. By themselves, these variables present significant challenges to patient-physician communication regarding outcomes of critical interventions. This is especially true of the critically ill patient, who may or may not have the cognitive capacity and wherewithal to meaningfully participate in conversation.
There are numerous challenges to communicating realistic outcomes of critical, often end-of-life (EOL) care interventions. Initial patient expectations of treatment benefit may be wildly inaccurate, with one study reporting patient estimate of survival after cardiopulmonary resuscitation (CPR) as high as 60 percent, closely matching the survival rates of patients after CPR on television. 1,2 Moreover, physicians are generally poor prognosticators, particularly in the terminally ill population. For example, physicians are generally far too optimistic about their patients’ chances of survival.3 It should then come as no surprise that physicians are inadequately trained to make prognoses and have EOL care discussions and frequently avoid the discussion altogether.4–6 When providers do approach patients, they often do so by asking about lifesaving interventions it has taken health care providers years of professional development to understand, without assessing patients’ goals of care, sometimes leading to discrepancies between patient preferences and the care provided to them.6,7 Finally, if patients lack decision-making capacity, there is no guarantee family members can represent the patients’ preferences, which they do accurately just 68 percent of the time.8
For those critically ill patients who arrive with an advance directive, physicians might be inclined to believe that communication regarding EOL care interventions and their potential outcomes ought to be straightforward. Unfortunately, that assumption is often wrong and the situation more complex. Assuming for the moment that the advance directive has actually been transported with the patient, filled out correctly, and signed by the patient, the documents themselves have significant limitations and flaws. They assume incorrectly that patient preferences are stable over time.9 Furthermore, patients and their families frequently misunderstand their meaning or how they will be applied to specific scenarios.10 In fact, evidence suggests that patients’ preferences for CPR and intubation, even those with do-not-resuscitate/do-not-intubate (DNR/DNI) documents, are highly dependent upon the perceived reversibility of their condition.11,12 As such, advance directives and DNR/DNI documents may not provide the guidance clinicians would like concerning the content of the EOL care discussions in the emergency department.
The Ethics of Transparency
Many physicians and ethicists cite transparency as the main tool used in order to better communicate realistic outcomes to patients and their families when choosing to perform or withhold critical interventions in the emergency department. It is the physician’s duty to explain both treatment goals and expected outcomes, particularly in the case of the resuscitation of the acutely decompensating, terminally ill patient. Without transparency, it is impossible to have adequate consent to or refusal of medical treatment, either by patients or their families. Physicians must describe their thinking, including the expected outcome, in order for patients and their families to truly be able to choose what the next steps will be.13,14
Each person has their own unique set of values, beliefs, and goals that together shape their personal philosophy about life and death. Individuals, therefore, have a distinctly different set of measures that they use when determining their opinions and desires surrounding EOL medical care.15 This only makes transparency about EOL care and prognosis from treating physicians that much more important. Physicians must be as accurate as possible when discussing both the expected quantity and quality of life (QOL) that patients and their families can expect. Ethicists have tried to create tools to aid them in the complex endeavor of these factors, though statistically they are often vastly incorrect about the time patients have left to live. Also, some ethicists argue that QOL is impossible to measure without knowing the individual patient on a familiar basis and therefore are typically useless to emergency physicians.16 QOL to a professional musician may involve fine motor coordination of both hands and to a young mother may mean the ability to carry and see her child.
Patients and families experience uncertainty and anxiety near EOL. They are often scrambling for hope and looking to the physician as the care team leader to give them some hope for meaningful survival. It is humane to offer hope. We have all seen the anecdotal patient who has meaningful survival against all odds, and we want the best for our patients. As our patients navigate through this painful and impossibly difficult process, we must be transparent in our medical advice and opinion, particularly when it comes to EOL expectancy and disability.
Identifying the Terminally Ill Patient
The identification of patients who would benefit from EOL evaluation and/or intervention is the largest obstacle for emergency physicians. Recognizing when to focus on QOL and comfort rather than life-prolonging treatment is particularly challenging for physicians, patients, and their families.17 Triggers for assessment of palliative and EOL needs may include:18
• Diagnosis of a progressive or acutely life-limiting illness;
• Critical events or significant deterioration during the disease trajectory;
• Significant change in the patient’s or caregiver’s ability to cope and need for additional support;
• The clinician not being surprised if the patient were to die in the next 12 months; and
• Onset of the EOL phase; all curative therapy has been exhausted for a progressive serious disease.
Perhaps the simplest method of identifying EOL patients is answering the question, “Would you be surprised if this patient died during this admission?” If the answer is no, the patient would likely benefit from an EOL evaluation and/or intervention. Although various screening tools exist, understanding various trajectories is beneficial in transitioning to EOL care and in communication strategies.19
ACEP’s Choosing Wisely initiative recommendations state, “Don’t delay engaging available palliative and hospice care services in the emergency department for patients likely to benefit.”20 Identifying patients is the critical first step. After using available assessment tools to recognize patients who may benefit, a referral can be made to the existing in-hospital or community hospice intake case manager for evaluation and further discussion with the patients and their families.
Rapid Assessment in the Critically Ill Patient with a Terminal Condition
In the absence of clear goals for medical interventions as the patient nears EOL from a terminal illness, the nearest emergency department becomes the default destination once the patient begins physiological decline. This is typically brought on by predictable organ failure or infection. In such situations, if the patient or family is unprepared to manage this expected trajectory of decline, the emergency physician becomes responsible for recognizing the situation and its context while simultaneously guiding communications to steer medically appropriate interventions within the context of the patient’s goals for those interventions.
As emergency physicians, we are comfortable identifying surgical situations where there are no reasonable interventions to alter the outcome. Some examples include the patient with metastatic cancer and carcinomatosis who presents with a ruptured viscus and multi-organ failure, the elderly patient with a devastating intracranial hemorrhage with mass shift and herniation, and the person struck by a car and found pulseless in the field with no return of spontaneous circulation by the time of arrival to the emergency department. It may be less clear what interventions are appropriate in a patient who is dying from a terminal medical illness. With a few simple guiding principles, emergency physicians can effectively navigate these critical moments while keeping the goals of the patient a priority.
A rapid approach to communication in such critical situations comes from the Education in Palliative and End-of-Life Care–Emergency Medicine (EPEC-EM) curriculum.21 Most of us were trained to use the “A, B, C, D” approach for initial evaluation of the critical patient, where A=airway, B=breathing, C=circulation, and D=disability. The EPEC-EM approach draws on this model to allow for a simultaneous assessment of palliative considerations to drive intervention decisions. In this model, A=advance care plan (is there one available to review?), B=better symptom control (what can be immediately done to mitigate overwhelming symptoms such as dyspnea or pain?), C=caregivers (is there an available caregiver for information on the patient’s clinical context and recent functional changes?), and D=decision-making capacity (does the patient have capacity to discuss goals, or is the legal surrogate identified and accessible?). The four points may only take minutes to accomplish yet have the potential to dramatically affect the outcome for the patient.
With this initial rapid palliative assessment completed, the expected outcomes of various medical interventions can better guide the emergency physician in a discussion with the patient or surrogate on the patient’s priorities and goals. For example, if the emergency physician recognizes that the patient is likely to die during this hospitalization, regardless of critical interventions, it would be reasonable to express to the surrogate “worry” about how dire the situation appears. It is also reasonable in such a situation to ask the surrogate about whether the patient had expressed, or if the surrogate has an understanding of, the patient’s goals, values, and perspective on medical priorities near the end of life. Had the patient talked about whether “dying on machines” was acceptable or unacceptable? Does “being comfortable in a peaceful situation if I am dying” sound more consistent?
These ideas may well be clear already in the mind of the surrogate, even in the absence of an advance directive. If the goals are already clear under the medical circumstances described, then the interventions are dictated by those goals. If physiological support through the end of life is the priority, regardless of the patient’s prognosis, or if the discussion is not possible and the goals cannot be reasonably discerned in those brief moments when physiological intervention is critical, then the emergency physician will intervene appropriately, of course. Having opened the discussion about the value of these interventions, the emergency physician will have initiated an essential and time-sensitive dialogue with the family as they consider the role of ongoing critical interventions while the patient’s condition evolves in the intensive care unit. If comfort is the priority, then hospice involvement or a palliative care consultation might be the most important intervention.
Dr. Jesus is attending physician at Augusta Medical Center in Fishersville, Virginia and subcommittee chair for publications of the ACEP Ethics Committee.
Dr. DeSandre is the chief of Palliative and Supportive Care at Grady Memorial Hospital; and the program director of Fellowship in Hospice & Palliative Medicine and assistant professor of emergency medicine at Emory University.
Dr. Fairbrother is assistant director of undergraduate medical education at the Ronald O. Perelman Department of Emergency Medicine at New York University School of Medicine in New York.
Dr. Rosenberg is chairman of emergency medicine at St. Joseph’s Healthcare System and associate professor of clinical emergency medicine at New York Medical College.
References
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