INTRODUCTION
The goal of palliative care is to relieve the suffering of patients with serious illness. Regardless of the patient’s prognosis, relief of suffering should be a primary goal for both emergency medicine and palliative care.1 Palliative care is defined by specialty advocates as the physical, spiritual, and psychosocial care given by multiple disciplines to patients and their families who are living with life-threatening illness.2 Although these principles are applicable to all stages of a patient’s illness, a palliative care consultation from the ED is generally considered in the context of previously predicted end-of-life care. Hospice care, a branch of palliative care, is a comprehensive program of palliative treatment that is appropriate when patients with chronic, progressive, and eventually fatal illness are determined to have a life expectancy of 6 months or less. Palliative care is patient centered rather than disease centered. It strives to ensure that the patient or his or her (formal or informal) representatives have chosen realistic goals of care after the patient’s diagnosis, prognosis, and therapeutic options have been considered. This discussion and decision making should take place during a meeting that includes the patient’s healthcare team, surrogate decision maker(s), and those loved ones who are privileged to receive confidential information.
Palliative care is guided by the axiom that distressing symptoms should be treated. It thus provides expert assessment and treatment of symptoms, including pain, dyspnea, and vomiting. Pain is the most common reason for seeking care in the ED, accounting for 58% to 78% of visits in the United States.3,4,5 Unfortunately, only 60% of patients reporting pain receive pain medications, and 74% of patients who present in pain are discharged in moderate to severe pain.6 Dyspnea is the sixth most common chief complaint and vomiting the ninth most common chief complaint of patients presenting to the ED7; statistics are not available to document the success or failure of the emergency physician’s attention to alleviating these symptoms.
Palliative care also trains healthcare professionals to compassionately communicate diagnosis, prognosis, and treatment alternatives and guide the formulation of a therapeutic plan. Palliative care clinicians work to coordinate caregivers and interventions for the patient and family, to make care more effective, and to lessen the stress and obstacles for achieving satisfactory outcomes. Standards for compassionate care spelled out by the Institute of Medicine8 and numerous professional societies require that distressing symptoms be alleviated concurrently with all treatments directed toward the pathology of the medical disorder. The patient or surrogate must play a key role in decisions regarding care.
The subspecialty of hospice and palliative medicine was co-sponsored by the American Board of Emergency Medicine, recognized by the American Council of Graduate Medical Education, and officially approved by the American Board of Medical Specialties in 2006. In the spring of 2007, the American Board of Emergency Medicine approved the seating of duly qualified emergency physicians for the new Palliative Care Specialty. The first American Board of Medical Specialties board exam, administered in 2008, qualified the first emergency medicine physicians for practice of the subspecialty of hospice and palliative medicine.9
In June 2008, the American College of Emergency Physicians issued the policy statement, Ethical Issues and End-of-Life Care (Table 299-1).10 In March 2008, the Emergency Nurses Association published a position statement, End-of-Life Care in the Emergency Department, spelling out practice and leadership roles for nurses in the ED. And most recently, on November 10, 2011, The Center to Advance Palliative Care (the primary advocate for palliative care in the United States), released its Improving Palliative Care in Emergency Medicine (IPAL-EM) project. This project informs and enables EDs to develop thoughtful, creative, and streamlined programs to integrate palliative care into the day to day operation of the ED.11
The American College of Emergency Physicians believes that: Emergency physicians play an important role in providing care at the end of life (EOL). Helping patients and their families achieve greater control over the dying process will improve EOL care. Advance care planning can help patients formulate and express individual wishes for EOL care and communicate those wishes to their healthcare providers by means of advance directives (including state-approved advance directives, do not attempt resuscitation orders, living wills, and durable powers of attorney for health care). To enhance EOL care in the ED, the American College of Emergency Physicians believes that emergency physicians should: Respect the dying patient’s needs for care, comfort, and compassion. Communicate promptly and appropriately with patients and their families about EOL care choices, avoiding medical jargon. Elicit the patient’s goals for care before initiating treatment, recognizing that EOL care includes a broad range of therapeutic and palliative options. Respect the wishes of dying patients including those expressed in advance directives. Assist surrogates to make EOL care choices for patients who lack decision-making capacity, based on the patient’s own preferences, values, and goals. Encourage the presence of family and friends at the patient’s bedside near the end of life, if desired by the patient. Protect the privacy of patients and families near the end of life. Promote liaisons with individuals and organizations in order to help patients and families honor EOL cultural and religious traditions. |
By implementing principles of palliative care (Table 299-2), emergency physicians will become better skilled at assessing patients’ preferences and health status to determine whether initiating aggressive therapy is both concordant with the patients’/surrogates’ preferences and potentially beneficial. Patients already receiving a palliative care approach will be able to have their existing care plan continued in a coordinated fashion when presenting to the ED for worsening symptoms, although they would be more optimally managed as outpatients.12
Who: Patients with serious, potentially life-threatening illness and their families. What: From potentially curable conditions in the presence of chronic devastating disease when standard treatment impedes the patient’s remaining quality of life, to incurable conditions like stage IV heart failure, metastatic lung cancer, or advanced dementia. When: After a lifespan-limiting prognosis has been defined, or when requested by patients and their families to enhance the patient’s quality of life. Late-stage palliative care for incurable illnesses with a prognosis estimated of six months or less is provided in the United States under the hospice benefit of Medicare. Where: In the ED and every other setting in which the patient receives care, or wishes to receive care, such as at home. Why: Because the relief of suffering is the primary goal of medicine, and there are few places with greater patient suffering than in the ED. How: The patient/family decide the goals of care after a realistic discussion based on diagnosis, prognosis, and effectiveness of potential therapies. An interdisciplinary team consisting of at least the doctor and nurse provides care measures, such as symptom relief, and initiates the coordination of care needed to reach the patient’s goals. Most commonly this occurs in consultation with a palliative care service, unless the emergency physician is trained in palliative care. Who Decides: The patient, provided he/she retains decision-making capacity, or the surrogate decision maker, the legally appointed Durable Power of Attorney for Healthcare or closest family relative who speaks for the patient. |
EPIDEMIOLOGY
In 2006 in the United States, 36% of people who died were receiving hospice care at the time of death, and a total of 1.3 million people received hospice care in 2006. Although hospice was initially designed for cancer patients, 53.6% of patients enrolled in hospice in 2005 had a noncancer diagnosis. About 58% of U.S. residents die in an acute hospital setting.13
In 2002, there were 12.7 million people aged >65 years in the U.S.14 In 2030, there will be over 72 million elderly people. The Hospitalized Elderly Longitudinal Project study found that the very elderly (>80 years) are most likely to want and to consider comfort care as the best option when facing serious chronic illness.15 The surge in growth in the aging population will increase the demand for quality palliative care.
The U.S. healthcare enterprise is facing a large crisis due to the high cost of health care, particularly Medicare. Approximately 30% of healthcare costs occur in the last 6 months of life. Data from the Health and Retirement Study showed that 51% of those over age 50 visit the ED during their last month of life, 77% of those are admitted to the hospital, and 68% of those admitted die during their hospital stay.16 A meta-analysis published in 1999 found that the use of hospice saved as much as 40% of healthcare costs during the last month of life, and 17% over the last 6 months of life.17 A subsequent study found that hospice care reduced Medicare costs during the last year of life by an average of $2309 per hospice user.18 Admitting eligible patients to hospice is one promising route for addressing the quality/cost chasm.19
Currently, only 4% to 7% of hospitalized patients are referred to palliative care or hospice directly from the ED.20,21,22 The average time in the hospital before transfer to a palliative care bed is 5 to 9 days.21,22
IDENTIFYING PATIENTS FOR PALLIATIVE CARE
In 2011, the Center to Advance Palliative Care released its Improving Palliative Care in Emergency Medicine program, a program that provides a thoughtful approach to palliative care practice in the ED, formulated for and by emergency clinicians. The program covers all aspects of palliative care in the ED.11 Emergency physicians have enthusiastically received the Improving Palliative Care in Emergency Medicine program,11 despite expressing concerns about the challenges facing them when discussing palliative or hospice care with patients such as interruption of workflow, lack of long-term relationships with patients, and lack of training to facilitate interactions.23
Palliative care needs include the management of a cluster of technologies associated with diagnoses of advanced, frequently incurable conditions.24 Patients whose long-term care needs are complex and require skilled nursing care for transfusions, tracheostomy care, or infusions of antibiotics or inotropes are likely in need of palliative care, especially if the disease is progressive.
Functional decline is the loss of the ability to care for oneself. This ranges from the loss of complex abilities, like driving, shopping, and managing finances, to basic activities like ambulating to the bathroom and getting safely out of bed. The loss of activities of daily living is the cardinal feature of decline, especially if accompanied by unintentional weight loss, and indicates the need for increased care assistance and suggests a short life expectancy.
Space in this textbook does not allow for a comprehensive discussion of formulating a prognosis and how to share it with patients and families. There are several key diagnoses and prognostic findings that are extraordinarily helpful to understand. Patients with chronic, progressive, life-threatening diagnoses will almost always benefit from palliative care. Those with extensive disease, be it metastatic cancer, organ failure, or neurologic deterioration (with anorexia/cachexia and decreased self-care) are frequently on a dying trajectory.25 Examples of diagnoses of patients who may benefit from palliative care are listed in Table 299-3. A predictive instrument known as the Palliative Prognostic Score correlates with prognosis.26
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