End of Life

Overview

According to The World Health Organization, palliative care is “…an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.”

Palliative care is usually provided by an interdisciplinary team of experts that offers comprehensive care and support systems for patients with a serious illness, including but not limited to those at the end of life. The focus of palliative care is to improve the quality of life for these patients and their family members. Expert symptom management and advanced communication skills focused on aligning patient goals and treatments are the two most critical components that palliative care teams bring to the care of patients with serious illness. Patients can receive active disease-focused treatment (e.g., cancer patients undergoing chemotherapy) while concurrently receiving palliative care. Palliative management is provided to inpatients through consultation, and home-based services and outpatient clinics are increasingly available. Palliative care has been shown to improve patient and caregiver quality of life, reduce depression, decrease the aggressiveness of EOL care, increase advance directive completion, decrease hospitalizations and length of stay, and reduce overall costs.

Palliative Care in the Emergency Department

In 2006, the American Board of Emergency Medicine joined with nine other specialty boards to cosponsor the American Board of Hospice and Palliative Medicine. In 2013, the American College of Emergency Physicians published, as part of the Choosing Wisely Campaign, the recommendation that emergency clinicians should engage patients who present to the ED with chronic or terminal illnesses, and their families, in conversations about palliative care and hospice services. This alliance has recognized the real need for emergency clinicians to address the wide range of interventions and management decisions that are relevant at the end of life. The integration of emergency medicine and palliative medicine has stimulated educational efforts to define the scope of ED-based palliative care and curriculum design.

Early referral from the ED to hospice and palliative care services can benefit select patients, resulting in improved quality of life. There has been an explosive growth in palliative care programs over the last decade, making the availability of palliative medicine consults more routine. Regardless of subspecialty availability, there is a basic palliative care skill set that can be incorporated into the emergency clinician’s practice. Communication skills can facilitate difficult conversations related to patient goals and wishes regarding the use of invasive therapies like intubation and CPR, how to interpret and apply advance directives, the basics of prognostication, and how to provide EOL symptom management for the most commonly encountered symptoms such as dyspnea and pain. The national Education in Palliative and End-of-Life Care for Emergency Medicine (EPEC-EM) curriculum has been designed to provide training and skills needed to be successful in this arena. Over the last decade, there has been an increased focus on the practical and operational aspects of palliative care delivery in the ED setting. Key questions include not just the “what” but the “how” to provide optimal palliative care. Identifying the right patient and the appropriate level of intervention needed has been the focus of much of the research.

Overview

Hospice care is a type of palliative care available to patients with a terminal disease and an expected prognosis of 6 months or less if the disease runs its usual course. The hospice movement, which started in England in the 1950s, initially sought to provide a haven of medical care for persons dying of cancer. Home and inpatient hospice programs now exist throughout the United States (US) and are funded through Medicare.

Currently, hospice care is provided for an expanded spectrum of end-stage illnesses, including, but not limited to, cancer, organ failure, and neurologic diseases such as dementia, ALS, and stroke. Hospice care includes a set of services provided in the home, free-standing inpatient facility, hospital, or nursing home. Some hospice agencies use wards or units within the hospital setting, and others use beds dispersed throughout the hospital; some use both. Hospice services are delivered by an interdisciplinary team. All patients enrolled in hospice care have a supervising physician who authorizes the medical plan of care. Hospice field teams may consist of physicians, registered nurses, case managers, certified nursing assistants, social workers, chaplains, and volunteers. When a patient is receiving hospice care, the patient and surrogates agree that the goal is to maximize quality of life, with a focus on symptom management and relief of suffering, and that any services the hospice is expected to pay for must have prior approval of the hospice. If the hospice authorizes transfer to an ED for care, the hospice will usually cover all ED services. If a patient unilaterally decides to seek emergency services without partnering with the hospice, the patient may be at risk of losing hospice services because the hospice agency is the care plan manager.

Election of hospice care is not synonymous with “do not treat.” Patients receiving hospice care can be treated for infections, receive artificial nutrition and hydration, undergo palliative invasive interventions aimed at improving quality of life, or receive palliative disease-directed therapy. These interventions need to be assessed and recommended based on the goals of care assessment. Depending on the admitting diagnosis, however, patients may or may not have to forgo certain treatments upon enrollment. For example, cancer patients are generally required to stop chemotherapeutic agents, whereas furosemide and even dobutamine infusions may be covered for patients with heart failure.

Individuals are considered for hospice care when they meet disease-specific prognostic criteria and have goals that are consistent with the hospice philosophy of care. Because the focus is on quality of life and disease management in the home setting, patients planning on returning to the ED or hospital in the event of a medical crisis are not ideal candidates for enrollment. For patients eligible for hospice but unable to enroll because of inconsistent goals or a desire to pursue disease-modifying treatments like chemotherapy, palliative care consultation can bridge the gap by providing excellent symptom management, psychosocial support, and assistance with goal setting and advance care planning. Home and inpatient hospice programs now exist throughout the United States and are funded through Medicare, Medicaid, and private insurers. Over time, there has been a small but steady increase in hospice utilization by Medicare recipients, with almost half of Medicare decedents accessing hospice in 2017. The median time from enrollment to death is 24 days, often leaving insufficient time for many of the services that hospice can offer.

Hospice and the Emergency Department

Patients enrolled in hospice care utilize the ED significantly less than nonhospice patients at the end of life. Still, hospice patients do present to the ED for a variety of reasons, including panic regarding decline, uncontrolled symptoms, inability or lack of the hospice agency to respond to needs, desire of the patient or family to seek additional opinions regarding care, and concern regarding the care provided by the hospice agency (often a concern regarding the use of medications). Under the US hospice benefit, the hospice agency is the patient’s total care manager for anything related to the hospice diagnosis. The hospice should be notified if the patient receives care in the ED. If the hospice authorizes transfer to an ED for care, the hospice will usually cover all ED services. If a patient unilaterally decides to seek emergency services without partnering with the hospice, the patient may be at risk of losing hospice services because the hospice agency is the care plan manager.

An ED visit does not mean that the patient no longer desires hospice care. Although patients and families are instructed to call hospice before going to the hospital, this does not always occur. Patients and caregivers might tell clinicians that they do not understand hospice care or may express concerns that the hospice agency is not providing enough interventions. It can be difficult for some patients and families to accept the comfort care philosophy of hospice; hospice care may be equated with giving up, and patients and caregivers may fear that they will die quickly if enrolled. Despite patient or caregiver perceptions, hospice services may be able to meet their evolving needs, including antibiotics, artificial nutrition, hydration, arrangement of palliative procedures, and palliative radiation or cancer-directed therapy.

Hospice enrollment directly from the ED has been increasingly described and promoted ( Box e5.1 ). The emergency physician can certify that the patient has a terminal disease and write hospice admitting orders. Because of the 24/7 nature of hospice care, all hospice agencies typically have on-call staff that can be reached at all hours; many of them can respond to the needs of the ED for emergent admissions. For some patients and families, the ability to avoid regular hospital admission and its associated risk of hospital death can be very meaningful. Increasingly, hospices have hospital-based services that are open to ED admission.

For actively dying patients with a limited prognosis of hours to days, or a high symptom burden requiring parenteral therapies, inpatient hospice is often the best option. There are regional variations in how patients can receive inpatient care, with some hospice agencies contracting for beds in acute care hospitals, and others having freestanding facilities. Transitions from ED to inpatient hospice are generally easier than a transition home with hospice care. While the latter is possible, it may take more planning and coordination, particularly on the part of caregivers, to be successful. Not surprisingly, caregivers rate the quality of EOL care higher when hospice is involved and when dying occurs outside of the hospital setting which underscores the need for hospice transitions to be considered from the ED.