Many patients with serious illness spend months or years in a chronic disease state in need of optimal physical, spiritual, psychological, and social care. Comprehensive palliative care that focuses on the relief of physical, spiritual, social, and psychological suffering proactively defines the goals of care, identifies and informs surrogate decision makers, and supports advanced care planning. Best care models suggest that high-quality palliative care be provided across the disease trajectory at each entry to the health care system.1–3
As patients decline and approach end-of-life, they typically find themselves seeking care for intercurrent illness or symptom management, such as pain, more frequently. Those with severe and chronic illness often have increased symptom burden and find themselves presenting for emergency department (ED) care. Emergency clinicians have reported that they feel uncomfortable assessing and directing care as a patient approaches end-of-life and are unsure of the role of the emergency clinician during this time.4
Only recently have aspects of palliative care emerged in the emergency medicine (EM) literature through quality indicators and core competencies, such as knowing how to access and manage palliative care needs in older adults in the ED and how best practices are defined.5–8
The core curriculum of EM training has recently added end-of-life care within systems-based management. Core areas of palliative care education have just begun to be defined.7,9
Care systems at the end of life are underutilized. Hospice care, the intense palliative care provided to patients with terminal illness and a prognosis of 6 months or less if the disease runs its usual course, is utilized by less than half of all people who die each year.10
However, while the majority of adult patients in America state that they would prefer to die at home, most will not. Approximately 70% of all deaths occur in a nursing home, long-term care facility, or acute care hospital.11
Of those who die in acute care hospitals, it is estimated that approximately 20% will die in the intensive care unit (ICU) setting.12
It is estimated that by the year 2030, there will be over 71 million persons over the age of 65 years, and 19.5 million over the age of 80 years in the United States.13
In 2009, a consensus-based approach was adopted for identification of geriatric training core competencies for EM residents.5
Specific palliative care competencies with respect to elders identified included: 1) rapid establishment, documentation of, and management of goals of care for those with serious or life-threatening conditions; 2) assessment and provision of ED management for pain and key nonpain symptoms based on the patient’s goals of care; and 3) knowledge of how to access hospice care and how to manage elders in hospice care while in the ED. We currently know little about how often or effectively the competencies are being employed and how these may affect patient outcomes.
Advances in therapies, improvements in public health, and the development of an infrastructure to deliver medical care may allow patients young and old to live with terminal illness longer and with improved quality of life. While many of these patients in their last hours, days, weeks, or months will arrive in an ED, few will die of sudden death. The vast majority will die of predictably advancing terminal illnesses such as heart disease, lung disease, cancer, neurologic disease, or renal disease.14
Every day, emergency clinicians experience and participate in such palliative and end-of-life care for these high-risk populations.15–19
While more attention has been focused on describing, assessing, and addressing palliative care needs in the ED in the past several years,16,19–21
there are still significant knowledge gaps for palliative care delivered in the emergency setting. Given the emergency clinician’s increasing role in this and the ED as an inevitable site of care for patients with advanced chronic and often terminal illness, there is a need to expand palliative and end-of-life care in the ED setting, with an emphasis on research to better understand the effect of education and clinical protocols.22–24
The objective of this article is to propose a research agenda for studying the integration of palliative care in the ED setting. This agenda is one of five research agendas that were developed from consensus and input from participants at the 2009 conference titled, “Improving the Quality and Efficiency of Emergency Care Across the Continuum: A Systems Approach.” This consensus conference was convened by the American College of Emergency Physicians (ACEP) and supported by funding from the Agency for Healthcare Research and Quality, the Society for Academic Emergency Medicine, and the Emergency Medicine Foundation. Other research agendas focused on frequent and high-cost users, health information technology, enhancing systems for acute, unscheduled care, and improving the efficiency of diagnostic evaluation after emergency care.25–28
The five group leaders were assigned by the planning committee, and all conference participants were asked to designate their group preferences via survey prior to the conference. The conference planning committee then assigned participants to groups based on preferences and the need to maintain parity across groups. For end-of-life care, a heterogeneous group of stakeholders involved in quality care in EM, geriatrics, and palliative medicine (clinicians, policy-makers, insurers, and researchers) came together at the Palliative Care Workgroup (PCWG) breakout session. The following is a description of PCWG findings and research agenda.