Abstract
Ms. Patterson is a 68-year-old woman with a history of hypertension who was at home when she developed a sudden-onset severe headache with vomiting. She called 911 but was obtunded on arrival of emergency medical services and could give no further history. She was brought to the emergency department (ED) within 40 minutes of the onset of headache. On arrival to the ED, her blood pressure is 205/110 mmHg and her heart rate is 90; she is taking shallow breaths with a respiratory rate of 32 breaths per minute with an oxygen saturation of 94%. She has a fixed pupil on the left and does not withdraw from painful stimulus on the right. Her family arrives 20 minutes later, and by then a computed tomography (CT) scan has been performed, showing a 7-cm intracerebral hemorrhage (ICH) with a “spot sign” on the CT angiogram. The spot sign describes an area of contrast enhancement within a hemorrhage that serves as an independent predictor of ICH expansion and poor outcome. On return from the CT, she has a Glasgow Coma Scale of 7.
Ms. Patterson is a 68-year-old woman with a history of hypertension who was at home when she developed a sudden-onset severe headache with vomiting. She called 911 but was obtunded on arrival of emergency medical services and could give no further history. She was brought to the emergency department (ED) within 40 minutes of the onset of headache. On arrival to the ED, her blood pressure is 205/110 mmHg and her heart rate is 90; she is taking shallow breaths with a respiratory rate of 32 breaths per minute with an oxygen saturation of 94%. She has a fixed pupil on the left and does not withdraw from painful stimulus on the right. Her family arrives 20 minutes later, and by then a computed tomography (CT) scan has been performed, showing a 7-cm intracerebral hemorrhage (ICH) with a “spot sign” on the CT angiogram. The spot sign describes an area of contrast enhancement within a hemorrhage that serves as an independent predictor of ICH expansion and poor outcome. On return from the CT, she has a Glasgow Coma Scale of 7.
Patients presenting to the ED with acute, severe illness are in a particularly vulnerable position. They, or their surrogates, are asked to make meaningful medical decisions often while in significant pain or distress. Emergency physicians (EPs) are often asked to care for unstable, acutely ill patients with incomplete information and only a short amount of time to establish trust and guide management.
15.1 Capacity
The capacity for decision-making about medical treatment requires that the patient be able to comprehend enough information about the decision at hand, as well as the consequences of each option. The patient should be able to weigh the risks and benefits of each choice compared to her own values and be able to communicate that choice.
Because our patient does not have the capacity to make or communicate her own decision, the EP needs to determine a surrogate to represent her wishes.
15.2 Surrogacy
The patient may have already prepared an advance directive document that establishes who can make medical decisions in their stead and/or what parameters they would want if they could make the decision. But the reality is that most healthy adults have not completed an advance directive or living will.1
In the absence of an established medical surrogate, or parameters for goals of care in the situation of end-of-life decision-making, the EP must turn to the state statutes on surrogacy. Each state provides guidance as to who may legally act as a surrogate, or decision maker, unless he or she waives the right to this.2 Surrogacy law varies from state to state. If there are no family surrogates available, the medical team, usually represented by a social work or case management professional, will petition the state to take legal guardianship.
Surrogates vary widely with respect to their preference to be in complete control of decisions vs. looking to the physician to guide decisions.3, 4 The EP, in only a limited period of time must determine what decisions need to be made, who the surrogate is, what their level of understanding is for medical issues and what their preference for decision-making will be. These preferences may be influenced by religion, ethnicity, culture and/or region.
Of course, these processes all take time, and in the ED in the midst of multiple patients each with critical decisions regarding life support there is rarely that kind of time.
So what to do?
15.3 The Unique ED Environment
The principles of critical decision-making are different in the ED compared with any other aspect of the healthcare environment. Acute phase critical illness in the ED forces time-pressured decisions. A patient’s pathophysiology may be associated with uncertain prognosis. Relevant to our case, we know that early prognostication in the case of devastating brain injury can be highly inaccurate and that withdrawal of life sustaining therapies in the first hours may indeed determine mortality.5–7
In some cases, the family will accompany the patient and have an abundance of information about the patient, including her medical history, values, wishes, and other nuanced therapeutic limitations such as no consent for blood transfusion. However, in many other cases, the patient may arrive alone, or even unidentified, with no evidence of her background, medical history or goals of care. In most hospitals in the United States, once a patient is identified, demographic and medical information can be found in the electronic medical record. Without background information, critical decisions default to the most conservative, which may not be in concert with the patient’s wishes.
One of the unique challenges for the EP is to get to know the patient and/or family in a very short period of time while simultaneously guiding the evaluation, diagnosis, and treatment of the patient. This process differs from the inpatient or outpatient setting, where there is more often ample time during the admission or over a prolonged patient–physician relationship to get to know the patient, their medical issues, values, and goals for care. The EP must quickly establish both knowledge of the patient and trust with the family, as well as determine how to educate the family on the pathophysiology, complications and expectations associated with each disease process.
In a case like the one presented here, with a sudden onset of a devastating injury, and in the setting of no prepared guidance, surrogates often default to considering what values were most important to the patient, or what they think the patient would say if she could communicate in real time with the contemporary knowledge of her injury. This does not take into account the possibility that the patient, or any of us, might look at quality of life decisions differently in the face of a devastating injury than we do when we are in good health.8 This “disability paradox” attempts to explain the gulf between self-reported acceptable or even excellent quality of life in individuals with disability and the undesirable existence they are perceived to have by others.9
Particularly in neurologic emergencies, early prognostication shapes subsequent medical care with the intention of avoiding futile, painful, and costly care in those with an inevitable poor outcome. The author of the original ICH score, developed as a clinical grading tool, but frequently used to communicate prognosis or even triage intervention, has cautioned against the self-fulfilling prophecy of a perceived poor outcome.10 In the absence of an underlying terminal condition or clearly stated wishes, clinician perception of a potentially poor prognosis should not preclude a reasonable trial of aggressive treatment.
Case, Continued
Ms. Patterson’s two eldest daughters arrive and are at the bedside, requesting an update. They are both distressed at their mother’s lack of response to questions and sonorous respirations. They do not know whether their mother has an advance directive, but one recalls how difficult it had been for their mother to watch their father suffer through a critical illness several years prior.
15.4 Advance Care Planning
When available, documentation of a patient’s choices or priorities before a crisis can inform time-pressured decisions in medically complex or fragile patients. Multiple models for advance care planning exist and can include standing do not resuscitate (DNR) and do not intubate (DNI) orders, durable powers of attorney, and advance directives (see Chapter 16, “Advance Directives: Law, Policy, and Use in Shared Decision-Making). These documents have become more common among elderly patients in the last two decades, although this trend shows negligible association with hospitalization or death in a hospital, suggesting that completing these forms may not significantly change a patient’s trajectory.11 In contrast, the Physician Orders for Life-Sustaining Treatment (POLST) paradigm – also known by a host of similar acronyms including POST, MOLST, MOST, COLST – has been shown to decrease unwanted intervention. POLST forms were developed to address the shortcomings of more cursory advance directives and are associated with decreased rates of in-hospital death and field resuscitation.12, 13 Although an advance directive can identify medical therapies a patient would or would not want, POLST can translate these wishes into medical orders in the ED and help to guide recommendations.
Although a POLST document can help to clarify overarching treatment goals, EPs must take care not to generalize specific directives, including DNR/DNI orders. Multiple studies have shown that patients with a DNR order receive less aggressive care and are significantly more likely to die during admission.14 In one study of patients admitted with acute myocardial infarction, 44% of those with a DNR died vs. 5% of those without.15 Further muddying the waters, several studies have found rates of discordance between documented wishes and informed consent to be upwards of 30%–50%.16, 17 These ambiguities leave many EPs in the position of defaulting to full resuscitation. Recently, several cases have caught the media’s attention with nonstandard advance directives – in one example, an unconscious patient with a “Do Not Resuscitate” tattoo across his chest.18 Without further information about the patient’s underlying motives, EPs should default to medically appropriate resuscitation.
Case, Continued
Related posts:
Chapter 2 – How Much Does the Family Want to Be Involved in Decision-Making?
Chapter 4 – Communication Skills for Critical Care Family Meetings
Chapter 5 – The Do-Not-Resuscitate Order
Chapter 6 – The Do-Not-Intubate Order
Chapter 20 – Brain Death Discussions
Chapter 13 – Severe Traumatic Spinal Cord Injury
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