A Model for Emergency Department End-of-life Communications After Acute Devastating Events—Part I: Decision-making Capacity, Surrogates, and Advance Directives*

Authors

  • Walter E. Limehouse MD, MA,

    1. From the Department of Medicine, Division of Emergency Medicine, Medical University of South Carolina (WEL), Charleston, SC; the Department of Emergency Medicine, Virginia Commonwealth University Medical Center (VRF), Richmond, VA; the Department of Emergency Medicine, University of Colorado (KJB), Aurora, CO; and the Department of Emergency Medicine and Center for Bioethics and Medical Humanities, Medical College of Wisconsin (AD), Milwaukee, WI.
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  • V. Ramana Feeser MD,

    1. From the Department of Medicine, Division of Emergency Medicine, Medical University of South Carolina (WEL), Charleston, SC; the Department of Emergency Medicine, Virginia Commonwealth University Medical Center (VRF), Richmond, VA; the Department of Emergency Medicine, University of Colorado (KJB), Aurora, CO; and the Department of Emergency Medicine and Center for Bioethics and Medical Humanities, Medical College of Wisconsin (AD), Milwaukee, WI.
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  • Kelly J. Bookman MD,

    1. From the Department of Medicine, Division of Emergency Medicine, Medical University of South Carolina (WEL), Charleston, SC; the Department of Emergency Medicine, Virginia Commonwealth University Medical Center (VRF), Richmond, VA; the Department of Emergency Medicine, University of Colorado (KJB), Aurora, CO; and the Department of Emergency Medicine and Center for Bioethics and Medical Humanities, Medical College of Wisconsin (AD), Milwaukee, WI.
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  • Arthur Derse MD, JD

    1. From the Department of Medicine, Division of Emergency Medicine, Medical University of South Carolina (WEL), Charleston, SC; the Department of Emergency Medicine, Virginia Commonwealth University Medical Center (VRF), Richmond, VA; the Department of Emergency Medicine, University of Colorado (KJB), Aurora, CO; and the Department of Emergency Medicine and Center for Bioethics and Medical Humanities, Medical College of Wisconsin (AD), Milwaukee, WI.
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  • Editor’s note: Part II will appear in a future issue of AEM.

  • The authors have no relevant financial information or potential conflicts of interest to disclose.

  • Editor’s note: Part II will appear in October 2012.

  • Supervising Editor: Brian Hiestand, MD, MPH.

Address for correspondence and reprints: Walter E. Limehouse, MD, MA; e-mails: wlimehouse@comcast.net, limehouw@musc.edu.

Abstract

ACADEMIC EMERGENCY MEDICINE 2012; 19: 1068–1072; © 2012 by the Society for Academic Emergency Medicine

Abstract

Making decisions for a patient affected by sudden devastating illness or injury traumatizes a patient’s family and loved ones. Even in the absence of an emergency, surrogates making end-of-life treatment decisions may experience negative emotional effects. Helping surrogates with these end-of-life decisions under emergent conditions requires the emergency physician (EP) to be clear, making medical recommendations with sensitivity. This model for emergency department (ED) end-of-life communications after acute devastating events comprises the following steps: 1) determine the patient’s decision-making capacity; 2) identify the legal surrogate; 3) elicit patient values as expressed in completed advance directives; 4) determine patient/surrogate understanding of the life-limiting event and expectant treatment goals; 5) convey physician understanding of the event, including prognosis, treatment options, and recommendation; 6) share decisions regarding withdrawing or withholding of resuscitative efforts, using available resources and considering options for organ donation; and 7) revise treatment goals as needed.

Emergency physicians should break bad news compassionately, yet sufficiently, so that surrogate and family understand both the gravity of the situation and the lack of long-term benefit of continued life-sustaining interventions. EPs should also help the surrogate and family understand that palliative care addresses comfort needs of the patient including adequate treatment for pain, dyspnea, or anxiety. Part I of this communications model reviews determination of decision-making capacity, surrogacy laws, and advance directives, including legal definitions and application of these steps; Part II (which will appear in a future issue of AEM) covers communication moving from resuscitative to end-of-life and palliative treatment. EPs should recognize acute devastating illness or injuries, when appropriate, as opportunities to initiate end-of-life discussions and to implement shared decisions.

Abstract

Resumen

La toma de decisiones para un paciente afectado de forma inesperada por una enfermedad o lesión devastadora traumatiza a su familia y a sus seres queridos. Incluso en ausencia de una atención urgente, los representantes del paciente toman decisiones terapéuticas al final de la vida que pueden tener efectos emocionales negativos. El ayudar a las personas que representan al paciente en estas decisiones al final de la vida en condiciones urgentes requiere que el urgenciólogo sea claro. y que realice las recomendaciones médicas con sensibilidad. Este modelo de comunicación para el final de vida en un servicio de urgencias tras eventos devastadores repentinos comprende los siguientes pasos: 1) determinar la capacidad para la toma de decisiones del paciente, 2) identificar al representante legal del paciente; 3) conocer los valores del paciente expresados en directrices avanzadas; 4) determinar la comprensión del paciente o del representante acerca del suceso que limita la vida y los objetivos esperados del tratamiento; 5) transmitir la información médica del suceso, que incluya el pronóstico, las opciones terapéuticas y las recomendaciones; 6) compartir las decisiones respecto al mantenimiento o la retirada de los esfuerzos de reanimación mediante los recursos disponibles y considerar las opciones para la donación de órganos; y 7) revisar los objetivos terapéuticos según la necesidad de cada caso.

Los urgenciólogos deberían dar las malas noticias de forma compasiva, aunque de forma que los representantes y la familia entiendan suficientemente tanto la gravedad de la situación como la falta de beneficio a largo plazo de mantener el soporte vital. Los urgenciólogos también deberían ayudar al representante y a la familia a entender que los cuidados paliativos del paciente se dirigen a obtener su confort, lo cual incluye el tratamiento adecuado del dolor, la disnea o la ansiedad. La parte I de este modelo de comunicación revisa la estimación de la capacidad en la toma de decisiones y la legislación respecto a los representantes y a las directrices avanzadas, e incluye las definiciones legales y la aplicación de estos pasos. La parte II (estará en un ejemplar futuro de AEM) tratará de la comunicación del paso de la reanimación al tratamiento paliativo al final de la vida. El urgenciólogo debería interpretar las enfermedades o lesiones agudas devastadoras, cuando ocurran, como una oportunidad para iniciar conversaciones acerca del final de la vida y de la implementación de decisiones compartidas.

Case Scenario

A 35-year-old previously healthy woman arrives at your facility with an acute, massive intracerebral hemorrhage that occurred while she was playing soccer. She has significant midline shift and was intubated en route. Neurosurgical consult says she has suffered devastating brain injury and believes she will die soon from brainstem herniation. The patient is bradycardic and agitated, so you sedate her. You and the neurosurgeon first meet the family when you inform them about the patient’s state, your assessment, and prognosis. The husband visibly is upset at the news, shaking and unable to speak. The patient’s two children and sister leave the room in tears. The news shocks them, because they believe emergency medical services (EMS) transported the patient to your facility —the regional neurosurgery referral center—for treatment. Since the patient is not a neurosurgical candidate, neurosurgery signs off the case. None of the intensive care units has an available bed. As is typical, your emergency department (ED) is very busy and already is boarding multiple admitted patients.

Decision-Making Capacity, Surrogates, and Advance Directives

Autonomy is a well-established principle of American law and ethics that posits patients have the right to determine what shall be done to their bodies. Schloendorff v. Society of New York Hospital, a New York Appellate Court case heard almost a century ago, grounds the primary legal foundation for this principle.1 When a patient presents to the ED with an acute life-threatening problem that is likely to be fatal, such as in the case presentation above, the emergency physician (EP), after providing all stabilizing treatment necessary in the initial stages, needs to establish whether or not the patient has the capacity to make a crucial health care decision. Support for the process of making personal decisions respects autonomy and patients as autonomous agents. Determining decision-making capacity encompasses the medical judgment regarding a patient’s ability to make a decision about medical care. Decision-making capacity consists of the patient’s ability to understand the information provided about medical treatment and to comprehend the consequences of choices. Capacity also includes the ability to evaluate the information, comparing the benefits of the proposed treatment and alternatives against their risks, using probabilistic thinking. Finally, capacity includes the ability to communicate a choice that should be relatively stable over time (Table 1).2,3

Table 1. 
A Framework to Evaluate Decision-making Capacity in EDs
  1. If patient can do all of these, patient has decision-making capacity.

1. Can patient understand information necessary to make a decision and understand consequences of different choices?
2. Can patient weigh benefits and risks of choices, including choice of refusing or forgoing treatment measured by patient’s own values?
3. Can patient communicate a consistent choice?

Tools such as the Mini Mental Status Test,4 or Aid to Capacity Evaluation,5 may help in determining decision-making capacity; however, emergency situations often require a more rapid approach.6 In the case presented above, the patient cannot perform any of the framework tasks required to exhibit a minimal level of capacity and therefore lacks decision-making capacity.

The District of Columbia Circuit Court decision in Canterbury v. Spence7 determined that a patient requires provision and understanding of this same information, in the absence of coercion, to proffer an informed consent or refusal of treatment options. In an emergency, however, consent for treatment is unnecessary under certain circumstances, and clinicians may treat patients without informed consent. This privilege, also known as the emergency exception, allows physicians to treat patients without their permission when: 1) life- or limb-threatening emergency exists; 2) time is of the essence; 3) the patient lacks decision-making capacity and no one legally authorized to speak for the patient is available; and 4) under the circumstances, a reasonable person would consent.8 The concept of emergency exception is common law with state-dependent interpretations, utilizing either case law or state statute. Emergency exception to informed consent does not mandate treatment that a patient would not want, if he or she understood his or her condition and could express a values-based decision to refuse. Moreover, the emergency exception does not mandate treatment that upon implementation would be ineffective or would prolong an incipient irreversible dying process.

In the scenario above, where the patient has suddenly become unable to make medical decisions, statistically she unlikely would have a preselected decision-maker, because most healthy nonelder adults do not complete advance directives.9,10 If, however, she has named a proxy or has designated an agent by her health care power of attorney, the EP should discuss with that person the patient’s condition and nature of recommended treatment, including possible palliative care. In most states, statutory law automatically appoints a legal surrogate while the patient lacks decision-making capacity, if she previously has not chosen a decision-maker. These health care surrogacy laws, often authorized by a state’s adoption of the Uniform Adult Health Care Consent Act, or the Uniform Health Care Decisions Act, allow the EP to turn to the appropriate surrogate in the hierarchy to make medical decisions for the incapacitated patient. The hierarchy often has a specific order: state-appointed guardian, agent, the patient’s spouse, the patient’s parents or adult children, the patient’s adult siblings, and other relatives or close friends. A person authorized to make health care decisions under these acts must base those decisions on the patient’s wishes to the extent that he knows those patient’s wishes (substituted judgment) or on the patient’s best interest. The statutes preclude the need to seek emergency guardianship in the absence of an advance care planning document.11 The content of these acts, however, may vary between states, so EPs should become familiar with their own state health care decision or adult health care consent acts.

In states without a surrogacy statute, if a patient has no appointed guardian and no advance directive, depending on the state, case law may support following a hierarchical order as in other states. If state case law does not support a presumption of a surrogate decision-making hierarchy, EPs should adhere to professional standards, if applicable, or follow custom and practice, normally turning to spouse, family members, and other loved ones for shared decision-making. Since no legal immunity may exist for making these decisions, obtaining consensus among the individuals who would normally be part of the decision-making hierarchy is important. A comprehensive chart of whether a state has a surrogacy statute, and if so, its provisions, is available from the American Bar Association’s Commission on Law and Aging website.12

Regardless of whether or not a patient has a decision-maker, the EP or designee should determine whether the patient has an advance directive. A documented advance directive provides directions from the patient to physicians in advance of incapacity.13 The two most common forms of advance directive are the power of attorney for health care and the living will.14 The power of attorney for health care appoints an agent for decision-making when the patient lacks decisional capacity as determined by medical personnel. This document typically allows the patient to state his or her values with respect to medical treatment at the end of life and may mandate whether the agent has the ability to withhold or withdraw certain forms of medical treatment, such as the use of artificial nutrition and hydration. These documents commonly address treatment decisions related to terminal illness or persistent vegetative state.

The other common form of advance directive is a “living will” (also known as an instructional directive or direction to physicians). The living will specifically applies when the patient has a terminal condition or, additionally, in some states, is in a persistent vegetative state. The living will typically states that if the patient has a terminal condition, as defined in the state statute, the patient either does not wish life-sustaining medical treatment or may specify the types of life-sustaining treatment, including artificial nutrition and hydration, ventilation, and resuscitation that she or he would desire. The living will is a direct message to the physician without the need for an appointed agent. However, some living will statutes do permit patients to name agents with power to enforce or revoke the patient’s health care decisions.

Health care systems may register and add completed advance directives to the patient’s chart, but one study found that only 27% of ED patients have completed these documents.15 Some experts question the effectiveness of these documents in achieving the patient’s preference, since they are often difficult to find, ignored by medical personnel, or overridden by a surrogate.16 However, recent research shows that completed advance directives do make it more likely that clinicians will follow patient wishes than if patients had no completed documents.17

The legal immunity provided by these documents to the physician for acting in good faith on the patient’s expressed wishes applies when the advance directive has been appropriately activated. To activate a power of attorney for health care or a living will, among other requirements, two physicians, or in some states, a physician and psychologist, must determine the patient lacks decision-making capacity.18 Even if the patient’s advance directive has not yet been formally activated through this process, the advance directive can be helpful to the EP in determining the patient’s values and wishes. However, EPs should be aware that even though advance directives often address patient values and wishes, their terminology may not address directly specific ED decision-making.

Sometimes advance directive statements clearly do apply in the emergency setting. For instance, if the patient’s directive states “no life-sustaining measures” or “no heroic measures,” these statements support withholding treatments commonly characterized as invasive, for example, intubation and resuscitation. If the patient’s advance directive states “do everything,” the EP should attempt all actions holding a positive balance of benefits over burdens of treatment directed toward reaching goals expressed by the patient or understood by the surrogate as reflecting patient values. Such actions may include palliative treatment options19 or even efforts to preserve organs for donation.

If the patient’s advance directive states no preference or values, but only appoints an agent, use reasonable medical judgment of the patient’s best interests and seek the input of the agent. However, EPs should know that certain jurisdictions may not allow withholding or withdrawal of artificial nutrition and hydration (an invasive treatment), if an advance directive does not specifically state that the agent has the power to do so.20

Interpreting any advance directive in the ED setting depends upon statements as written or expressed by the patient (including choices made by checking boxes next to statements on the directive), the medical condition of the patient, the understanding of the surrogate, if available, and the considered judgment of the ED physician. Additionally, if an EP encounters a patient with an advance directive from another state, even if the directive formally does not meet the requirements of the state in which the EP practices, the document nevertheless may provide important and clear evidence of the patient’s values and wishes.

When the patient has made such an advance directive, or the patient has orally expressed his or her wishes to the patient’s primary physician, the physician may utilize physician orders concerning life-sustaining treatment.21 Several states and other jurisdictions have adopted enabling statutes for specific physician orders on life-sustaining treatment (POLST).22 The POLST paradigm, which originated in Oregon, has become widespread;23 however, adopting states may apply different acronyms to the paradigm. New York has Medical Orders for Life Sustaining Treatment (MOLST), North Carolina has Medical Orders for Scope of Treatment (MOST), West Virginia and Idaho have Physicians Orders for Scope of Treatment (POST), and Vermont has Clinician Orders for Life-Sustaining Treatment (COLST).24 Under the POLST paradigm, the physician or other authorized clinician completes orders for comfort measures only, limited life-sustaining interventions, or full resuscitative efforts. Authorized interventions may include (or preclude) intubation, the use of artificial nutrition or hydration, dialysis, antibiotics, and other forms of life-sustaining medical treatment.25 Wherever adopted, POLST orders are valid outside of the hospital, throughout the EMS system, within EDs, and in some cases, inside the hospital. The clinician writing POLST orders may not even have privileges in the receiving hospital.

For some states without a POLST-type paradigm, the physician may use a prehospital do-not-attempt-resuscitation (DNAR) order (or community DNAR order or EMS DNAR order) that identifies the patient’s wishes not to be resuscitated, should the patient have an emergency medical condition involving cardiopulmonary arrest in the out-of-hospital setting. Enabling statutes or administrative rules often specify immunity for physicians following an advance directive, a prehospital DNAR order, or a POLST document.

Summary

Part I of this model for ED end-of-life communications after acute devastating events communications has covered determination of decision-making capacity, identification of surrogates, and eliciting patient values using advance directives. Discussion included definitions and legal requirements for application of these steps. EPs or their designees familiar with these concepts may complete the first steps quickly. Part II will cover communication steps moving from resuscitative to end-of-life and palliative treatment. The latter steps in this communications model require more time; however, the training tools discussed in Part II and commitment to indicated palliative care consistent with patient values can facilitate use of this communications model and implement our subspecialty practice of palliative medicine within EDs.

Acknowledgments

The authors acknowledge Jay Baruch, MD, Brown University, Providence RI.

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