Author: Catherine A. Marco, MD, Associate Professor, The Medical College of Ohio, Attending Physician, St. Vincent’s Mercy Medical Center, Toledo, OH.
Peer Reviewer: Jonathan Glauser, MD, FACEP, Faculty, Department of Emergency Medicine, Cleveland Clinic Foundation, Attending Staff, Residency Program, Emergency Medicine, MetroHealth Medical Center, Case Western Reserve University, Cleveland, OH.
"Why is this patient here?"
"I can’t cure metastatic cancer!"
"The primary care physician should have educated the patient!"
"Why doesn’t the patient have a DNR order?"
Each of the above statements/questions represents a valid concern regarding the emergency department (ED) management of patients who present for care near the end of life.
The daily practice of emergency medicine involves life and death decisions. While training in emergency medicine focuses on life-saving procedures and medications, dying patients often seek care in the ED for symptom relief, psychosocial support, or a variety of other reasons. Education, experience, communication, and compassion can improve the emergency physician’s (EP) ability to deliver medical care near the end of life that will serve to relieve suffering, improve communication of the patient’s preferences and goals of medical treatment, and improve overall care of the patient and family.—The Editor
There are a wide variety of challenging issues in end-of-life care in emergency medicine. A basic understanding of commonly accepted principles of bioethics can be valuable in assessing and debating ethical dilemmas. A review of some of the prominent issues and dilemmas frequently encountered in the ED is presented. Improved end-of-life care in emergency medicine can be delivered by improving understanding of palliative care, communication skills, religion, rituals, advance directives, resuscitation, variables, and outcomes. Ultimately, the goal of care at the end of life often is to provide comfort to the patient and family, rather than provide technologic interventions that are unlikely to benefit the patient.
The Physician’s Role at the End of Life
The role of the physician at the end of life is multifaceted. The primary goal of the physician traditionally has been accepted as preserving or restoring life. Because of this imperative, often, "There is a profound, unconscious, emotional rejection of death. Inasmuch as medicine is assumed to be curative, a patient’s death brings to the physician a deep and unacceptable feeling of defeat."1
However, in many cases, death should be accepted as a natural part of life by the patient, loved ones, and health care providers.2,3 Interventions deemed of unlikely benefit need not be offered to the patient merely because the technologic capability exists. When curative therapies do not exist, or no longer are effective, the role of the physician actually may broaden rather than diminish, as less tangible interventions and benefits attain greater significance. The physician should address the numerous physical, emotional, social, cultural, and spiritual challenges facing patients and loved ones.4-7 Comfort care should be provided, including treatment of pain, shortness of breath, nausea, fatigue, depression, or other symptoms.8
Palliative Care in Emergency Medicine
"It has become appallingly obvious that our technology has exceeded our humanity."—Albert Einstein
As the scientific potential achievements of technology (including diagnostic modalities, therapeutic procedures, advanced pharmacology, public health measures, surgical techniques, and other life-extending technology) have advanced, the average life expectancy worldwide has lengthened. As the technological armamentarium has expanded, and has achieved great capacity to prolong life, death at times is perceived as the physician’s enemy, to be painstakingly and perpetually fought.
Many agree that the ED is not an ideal location for end-of-life care. Numerous barriers to the best experience exist in the ED environment, including high noise levels, distractions, lack of privacy, uncomfortable settings, and the unfamiliar environment. Ideally, patients with a terminal condition should have adequate advance planning with the primary care physician to prepare for end-of-life issues, including advance directives, family education about expected events, and planning for death in the environment preferred by the patient, often in the home or a hospice. However, at present, patients with terminal conditions frequently are transported to EDs at the end of life to die in the ED environment, or for symptom management. Commonly encountered terminal conditions in emergency medicine include malignancy, neurologic disease, and cardio-respiratory diseases.9 Although the ED often is not the ideal setting for end-of-life care, because end-of-life issues frequently are encountered, it is essential that EPs develop a rational and thorough multidisciplinary approach to care at the end of life. Quality improvement goals directed toward improved end-of-life care can be effective in enhancing satisfaction of patients and families.10
Direct communication with the primary care physician and appropriate consultants may prove useful for long-term planning. Patients with improved continuity of care by primary care physicians may have reduced utilization of EDs.11 Many EMS systems lack protocols that address palliative care.12 Education of patients and families regarding end-of-life issues, in concert with the efforts of the primary care physician, may be of great value. Patients and families should anticipate the course of events, including expected symptoms and management, and appropriate actions at the end of life to ensure the desired setting for death.
Symptom Relief. Patients often seek care in the ED for management of symptoms related to a terminal condition. The most commonly reported symptoms include pain, dyspnea, anorexia, nausea, constipation, sleep difficulties, weakness, depression, fever, and incontinence.13-17
Pain. Pain is a common and serious complaint at the end of life. It has been estimated that 38-74% of cancer patients experience significant pain.18 Unfortunately, approximately 50% of these patients receive inadequate analgesia.19 Adequate pain relief is comforting, both to the patient and to the family. Concerns about addiction are irrelevant at the end of life; thus, pain management should be aggressive and satisfactory to the patient. Numerous avenues of pain control are available, including oral narcotics; intravenous narcotics; dermatologic delivery systems; patient-controlled analgesia (PCA); regional, epidural, and spinal nerve blocks; nonsteroidal antiinflammatory agents; and a host of others. Opioids traditionally have been a commonplace treatment for pain at the end of life. Numerous protocols to guide the appropriate use of opioid analgesia have been studied, typically suggesting rapid and aggressive titration of analgesia to pain relief.20,21
Several barriers to appropriate analgesia may exist, including psychological and educational barriers.22 Appropriate management of pain near the end of life never should be inhibited by concerns regarding addiction. Some patients may require alarmingly high dosages of narcotics to appropriately manage pain. Tolerance and high dosage requirements should not inhibit adequate pain control. Some physicians may be concerned unnecessarily regarding potential diminished respiratory drive that may be caused by narcotic use. Numerous authors support the appropriate use of narcotics for adequate pain management at the end of life, even in circumstances where diminished respiratory drive may be an unintended, but not unexpected, adverse effect. The American Medical Association Council on Ethical and Judicial Affairs has written in policy: "Physicians have an obligation to relieve pain and suffering and to promote the dignity and autonomy of dying patients in their care. This includes providing effective palliative treatment even though it may foreseeably hasten death."23
Anxiety. Anxiety can be a common complaint at the end of life. Anxieties and concerns regarding death and dying, pain and other symptoms, worldly affairs, and family members may be compounded by the ED environment. "Through the eyes of the ill patient, the surreal setting of perpetual windowless light, the feel of long waits punctuated by sounds of screaming and sirens, unimaginable smells, and glimpses of ultimate suffering all mark the experience as unforgettable," says Schears.8 Optimizing the environment may be one approach to anxiety control. Privacy and a quiet environment can be helpful, where possible. The judicious use of anxiolytics, such as benzodiazepines or barbiturates, often are appropriate.
Weakness and Fatigue. Weakness and fatigue are particularly common among oncology patients. Reversible conditions should be addressed, including anemia, medication side effects, depression, pain, insomnia, anxiety, and malnutrition. Some agents used to treat fatigue among cancer patients specifically may include corticosteroids, progestational agents, and psychostimulants.24 Many recommend nonpharmacologic management, including adequate rest, hydration, nutrition, counseling, and psychosocial support.
Nausea. Nausea commonly is encountered near the end of life. Pharmacologic agents such as ondansetron, prochlorperazine, promethazine, and metoclopramide can be helpful in controlling nausea. Smaller volume, high-nutrition meals may be more palatable to the nauseated patient.
Anorexia. Anorexia is another common symptom among terminally ill patients. Fortunately, anorexia often is more distressing to caregivers than to patients.25 Refusal of food and hunger often are not especially distressing to many patients, and often do not require specific interventions. The use of artificial hydration and nutrition are individual decisions, and should be made in accordance with the patient’s wishes.
Dyspnea. Shortness of breath is a commonly encountered complaint among patients with terminal conditions, and may occur in up to 43-73% of such patients.26,27 Traditional diagnostic measures such as oxygen saturation, respiratory rate, and arterial blood gas measurements correlate poorly with symptomatology.28,29 Self-reported levels of dyspnea are more accurate indicators of symptomatology. Appropriate management should be tailored to the etiology of dyspnea, correction of reversible conditions contributing to dyspnea, and symptomatic relief when no reversible condition exists. Pharmacologic symptom management also can be accomplished with the administration of opiates (often considered first-line therapy for dyspnea) and/or anxiolytic agents.30-32 Nonpharmacologic management also has demonstrated efficacy; measures such as administration of supplemental oxygen, improved respiratory muscle function, increased nursing presence, altering central perception, and patient education can be helpful in relieving dyspnea.26,27,33,34
Delirium. Delirium at the end of life may have a variety of etiologies, including organic brain disease, infection, medication effects, hypoxia, dehydration, and others. Reversible conditions should be treated. When indicated to relieve patient discomfort, pharmacologic management may be employed with agents such as benzodiazepines or butyrophenones.
Depression. Depression is a common symptom among patients near the end of life. It has been estimated to occur in 33-47% of dying patients.35,36 Various measures of depression, such as the Hospital Anxiety and Depression Scale, the Edinburgh Depression Scale, or simply asking "Are you depressed?" can be used.37,38 Depression has been demonstrated to correlate with desire for early death among terminally ill patients.39 While in many cases sadness is an appropriate emotion, clinical depression can be disadvantageous to the adjustment of the patient and family, and should be treated, in conjunction with the primary care physician and a psychiatric consultant, when appropriate.
General Symptom Relief. Many patients benefit from alternative, complementary, and homeopathic medicine with such interventions as acupuncture, nutritional therapy, chiropractic, spiritual healing, meditation, music therapy, aromatherapy, and other therapies.40-43
When traditional measures are unsuccessful at relieving symptoms, palliative sedation may be used as an effective means to provide patient comfort.44,45 Palliative sedation can interfere with the patient’s ability to communicate and interact, and decisions to provide palliative sedation should be made in accordance with the patient’s wishes.
The Role of Religion in End-of-Life Medical Care. Ironically, many advancements in technology have occurred during an era of increasing spiritual needs and attentions of the general public. Although by some measures participation in organized religion has decreased, increasing numbers of people report belief in God or some spiritual force, and report prayer or other spiritual practices.46-49 The indiscriminate use of technology may, in fact, lead to negative consequences, such as the unintentional abandonment of subjective needs, such as comfort, pain control, communication, spirituality, or other significant values.1 Although it would be inappropriate for physicians to suggest particular religious perspectives to dying patients, attention to religious issues important to each individual patient and family can be important in ensuring a meaningful end-of-life experience. Communication regarding religion, belief in God or other higher power, desire to pray or participate in other religious observances, and desire to involve pastoral care services can be helpful in assisting the patient with meeting spiritual goals at the end of life.
Dignity at the End of Life. Fear of loss of dignity is a significant concern for many patients near the end of life. These patients often also report associated psychological distress, symptom distress, and loss of the will to live.50 Communication with patients about goals, expectations, and personal preferences, and formulating a long-term plan to help meet those goals, can improve a patient’s sense of dignity and control at the end of life. When possible, privacy also can improve a patient’s sense of dignity and peace with family.
Communication. Effective and compassionate communication with patients and loved ones is an essential component of end-of-life care. An adequate understanding of the patient’s expectations and goals of medical treatment can improve the ability of the EP to provide the best care possible. Accurate information is useful to patients in developing realistic goals and expectations.51 For example, while some patients may wish to prolong life as long as possible, others may value dignity and pain relief, even at the expense of a potentially shortened life-span. Privacy and adequate time are essential to effective communication about life values and significant decisions.
An advance directive refers to any proactive document stating the patient’s wishes in various situations should the patient be unable to state his or her wishes in the future. The living will, which was adopted by many states in 1990, is a document suitable for some terminally ill individuals, and the treating physician accepts the provisions in advance. Many state that no life support be used in cases where meaningful recovery will not occur. Durable power of attorney designates a surrogate decision maker in the event that the patient no longer has the capacity to make medical decisions. In 1991, the Federal Patient Self-Determination Act mandated the opportunity to sign an advance directive for all patients admitted to a hospital. In many cases, the existence of an advance directive can facilitate the implementation of the patient’s specific wishes.
Unfortunately, despite widespread advocacy and legal mandates supporting the increased use of advance directives, only a minority of patients have completed an advance directive,52,53 and an even smaller minority present to the ED with the necessary documentation. Many health care providers are reluctant to discuss issues such as end-of-life care and advance directives. However, many patients welcome the opportunity to discuss their wishes.54-56 Most patients have definite opinions regarding resuscitation preferences, despite the lack of completion of legal advance directives.54,57 A recent study demonstrated the effective reduction of health care services utilization following a prospective advance directive implementation system in nursing homes.58 Though several commentators recommend a change in policy away from standing orders for resuscitation, social and institutional policies still suggest resuscitation attempts for most patients. However, there are many cases where dying should be accepted as a natural process, and perhaps palliative care, judgment, communication, and counseling with the patient, family, and friends may be of greater benefit than technology of unlikely benefit.59 Without advance directives, surrogate decision makers and physicians often make erroneous assumptions regarding the preferences of patients.60-62 Even with advance directives, there is significant disagreement among physicians regarding which specific procedures are appropriate for individual patients.63,64
Although studies conducted in other settings have demonstrated variable compliance with advance directives by medical personnel,65 recent studies have indicated that emergency medical personnel may comply with advance directives more often than previously believed. Most EPs (78%) withhold resuscitation attempts for patients with a legal advance directive, indicating a willingness to honor patients’ wishes regarding their own medical care.66 Additionally, most pre-hospital providers (89%) withhold resuscitation attempts for patients with a legal advance directive.67 These results suggest that advance directives may be especially significant in medical decision-making to emergency health care providers.
At the end of life, cardiopulmonary resuscitation frequently is undertaken. In many cases, this is appropriate and has a reasonable likelihood of improving outcome. However, in many other cases, it is unlikely to benefit the patient, and may not be in accordance with the values and treatment goals of the patient and family. Understanding resuscitation, outcomes, factors relating to outcomes, and alternatives is essential to decision-making regarding resuscitation.
There are numerous ethical issues and dilemmas related to resuscitation. Decisions must be made rapidly, and often must be based on suboptimal levels of information available to the emergency physician. Certain issues should be considered when making decisions in the resuscitation arena, including potential benefits of resuscitation (i.e., restoring life to the patient, a sense of closure and resolution of guilt for the survivors) and potential risks (i.e., financial and resource investments, resuscitation to a suboptimal quality of life, etc.)
It is estimated that sudden cardiac death occurs in an estimated 250,000-500,000 patients annually in the United States.68,69 An estimated $58 million in Medicare expenditures result from unsuccessful resuscitations annually in the United States. Resuscitation is, by nature, a high-cost, invasive, and labor-intensive endeavor, and in most clinical settings, carries a very low likelihood of success. Traditionally, most EPs attempt cardiopulmonary resuscitation for most patients who present with cardiac arrest, unless a legal advance directive is available.66 Since very few patients have completed legal advance directives, and only a fraction of those have the document readily available, the default option in most cases is to attempt resuscitation.
Reported survival rates for patients with cardiac arrest vary somewhat, dependent on a number of factors, including time elapsed since arrest (down time),70-72 presenting rhythm,73,74 cardiac activity on bedside echocardiogram,75 underlying medical condition,76 response to prehospital advanced life support (ALS) protocols,77,78 age,79 and long-term care.80 Overall, survival for victims of cardiac arrest to hospital discharge has been estimated between 0% and 16%.81-85 Certain identifiable groups of patients have survival rates approaching 0%, such as residents of long-term care facilities with unwitnessed arrests. Despite this relatively low success rate, current American Heart Association Guidelines, as well as many hospital policies, typically suggest or mandate resuscitation for all patients except those with prior Do-Not-Attempt-Resuscitation orders, clear signs of death like rigor mortis or dependent lividity, or if no physiological benefit can be expected after maximal therapy.86 Many EPs continue to attempt resuscitation on patients in cardiac arrest, in situations considered non-beneficial, often because of fears of litigation or criticism.66
Numerous studies have demonstrated inaccurate perceptions among the general public regarding cardiopulmonary resuscitation and the expected outcomes. Many erroneously believe that the success rate of cardiopulmonary resuscitation is between 40-60%.87-89 Some hypothesize that inaccurate knowledge is perpetuated by dramatically unrealistic portrayals of successful resuscitations in the media.90,91 Individual preferences regarding cardiopulmonary resuscitation often are unknown at the time of cardiac arrest.
Despite the apparent lack of communication through the use of advance directives, many individuals have strong personal preferences regarding cardiopulmonary resuscitation.92 Such preferences regarding resuscitation attempts vary widely, dependent on a variety of factors, including age, state of health, and clinical setting.93-96 Recent reports suggest that full resuscitative efforts are not necessarily desired by patients, and that trends toward societal consensus exist, in a variety of hypothetical resuscitation scenarios.97,98 Physicians’ decisions about attempting resuscitation often are influenced by such issues as perceived quality of life, age, down time, presenting rhythm, whether the arrest was witnessed, family preferences, fear of litigation, and other factors.99,100
Procedures on Recently Deceased Patients
The practice of performing procedures on recently deceased patients ("the newly dead") for educational purposes is controversial. The most important stated benefit of this practice is the fulfillment of the recognized need for hands-on practice for students and housestaff, as well as experienced physicians.101 The setting of the recently deceased patient provides a unique clinical setting with literally no risk to the patient. As a result, these trained physicians are able to competently perform these procedures on future, living patients, resulting in overall benefit to society. However, informed consent rarely is obtained in these settings.102 Some consider performing procedures without informed consent to be disrespectful, deceptive, or unethical. The recent literature demonstrates that most adults believe that consent from family members prior to practicing procedures on the newly dead is appropriate.103-106 Several studies have demonstrated the feasibility of obtaining consent for postmortem procedures from family members.107,108 In another recent study, however, only a minority of families consented to a postmortem procedure.104,107,109,110 The AMA recently instituted a nonbinding policy regarding procedures on recently deceased patients, which states that consent should be obtained.111
Until formal policies are developed by governing organizations in emergency medicine, EPs must operate within local and hospital policies, and make the choices they judge most appropriate in the specific clinical situations encountered. Factors to be considered, when making such decisions include the teaching benefit to the student and his/her future patients, the overall benefit to society, disfigurement produced by the procedure(s), and availability of the family and feasibility of informed consent.
Family Presence During Procedures and Resuscitation
Traditionally, family members are not typically allowed to witness resuscitation attempts. However, several recent reports have demonstrated positive results of this practice.112-115 Family presence may serve to allay guilt or disappointment, and may be a helpful part of the grieving process. Many families simply wish to have the option of being present. If family members are allowed to be present, a chaperone is recommended to assist with communication and education about procedures and other medical issues.
Physician-Assisted Suicide and Euthanasia
Currently, physician-assisted suicide is legal in only one state in the United States: Oregon. The Death with Dignity Act allows physicians in Oregon to prescribe lethal medications to terminally ill patients in certain circumstances.116 Active euthanasia is prohibited by law in the United States and many other countries. Although some believe physician-assisted suicide and euthanasia to be appropriate and compassionate for patients with terminal illnesses, physicians must obey the law. Even where permitted by law, the limited relationship between patients and EPs makes it inappropriate for EPs to be actively involved in physician-assisted suicide or euthanasia. However, EPs may encounter patients with complications related to physician-assisted suicide, or may treat patients who are contemplating physician-assisted suicide. Aggressive management of symptom control and appropriate communication with the patient and family may allay many of the fears that led the patient to consider physician-assisted suicide.
For patients who do not expire in the ED, EPs may play an integral role in formulating a long-term plan that facilitates achieving the goals of therapy of the individual patient. Open and honest communication about realistic expectations may assist patients in formulating and expressing personal preferences regarding disposition, planned location of death, psychosocial support, and symptom relief during the dying process.
Bereavement Support for Families
In addition to caring directly for dying patients, providing appropriate support for families and friends of patients is an important aspect of a positive experience for all involved. In many cases, the communication, care, and counseling provided for survivors (i.e., family, friends, etc.) of victims of cardiac arrest will have more impact than the actual resuscitative efforts. Bereavement programs utilizing multidisciplinary support services can be beneficial to families of patients who die in EDs.117 Several studies have identified specific actions as helpful to grieving families, including unrestricted visits, information from the hospital staff, viewing the deceased, written information, individual customs, and religious procedures; offering sedation to grieving family members was perceived as unhelpful.118,119 Prehospital providers also may be trained to provide satisfactory assistance to patients who choose to die at home rather than be transported to the hospital.120
Communication Regarding Death in the ED. EPs frequently have the opportunity to deliver news of death to surviving family and friends. This occurs both in unexpected deaths, often related to trauma or unexpected cardiac arrest, and in expected deaths among patients with terminal conditions. A majority of EPs find the notification of death to survivors emotionally difficult. Optimum care should be provided for families and friends, regardless of the level of treatment rendered and outcome.121 Communication with families about death and dying is a skill that can be taught and evaluated, as other clinical skills can be.122,123 Some general guidelines for such support might include those listed in Table 1.
There are a wide variety of clinical and ethical issues and dilemmas that involve care at the end of life. Basic principles of bioethics can be valuable in assessing and debating ethical dilemmas. Recognition and aggressive management of symptoms can be of great physical and emotional comfort to the dying patient and family. Education of patients regarding end-of-life issues, including resuscitation and advance directives, is crucial to improving the ability of the medical community to act in accordance with patients’ wishes. Communication with patients and families is an essential medical skill that should be taught in medical training and demonstrated with competence throughout the career of the EP.
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After completing the program, participants will be able to:
- Discuss the expected symptoms, management, and appropriate actions for the end of life patient;
- Explore the use of advanced directives for the end of life patient;
- Describe the controversies and possible solutions surrounding nonbeneficial interventions in end of life scenarios; and
- Discuss communication strategies with patients and families in end of life situations.
Physician CME Questions
1. Which of the following statements regarding the use of opioids near the end of life is false?
A. Opioids provide effective, titratable pain relief.
B. Opioids should be avoided in patients with a history of addiction.
C. Opioids may be used appropriately even when an unintended side effect may include respiratory depression.
D. Opioids may be safe even in very large doses in terminally ill patients.
2. Which of the following has not been described as an effective treatment for terminal dyspnea?
C. Supplemental oxygen
E. Patient education
3. Which of the following measures is not an effective measure of depression?
A. Mini-mental status examination
B. Hospital Anxiety and Depression Scale
C. Edinburgh Depression Scale
D. Asking the patient, "Are you depressed?"
4. Which of the following best describes the significance of family presence during procedures and resuscitation attempts?
A. It is emotionally distressing for most families.
B. It is a positive experience for most families.
C. It prolongs the grieving process for most families.
D. Families want physicians to decide whether they are allowed to be present.
E. It is appropriate for all families.
CME Answer Key: 1. B; 2. D; 3. A; 4. B