Research Priorities for Palliative and End-of-life Care in the Emergency Setting

Abstract

Palliative care focuses on the physical, spiritual, psychological, and social care from diagnosis to cure or death of a potentially life-threatening illness. When cure is not attainable and end of life approaches, the intensity of palliative care is enhanced to deliver the highest quality care experience. The emergency department (ED) frequently cares for patients and families during the end-of-life phase of the palliative care continuum. The intersection between palliative care and emergency care continues to be more clearly defined. Currently, there is a mounting body of evidence to guide the most effective strategies for improving palliative and end-of-life care in the ED. In a workgroup session at the 2009 Agency for Healthcare Research and Quality (AHRQ)/American College of Emergency Physicians (ACEP) conference “Improving the Quality and Efficiency of Emergency Care Across the Continuum: A Systems Approach,” four key research questions arose: 1) which patients are in greatest need of palliative care services in the ED, 2) what is the optimal role of emergency clinicians in caring for patients along a chronic trajectory of illness, 3) how does the integration and initiation of palliative care training and services in the ED setting affect health care utilization, and 4) what are the educational priorities for emergency clinical providers in the domain of palliative care? Workgroup leaders suggest that these four key questions may be answered by strengthening the evidence using six categories of inquiry: descriptive, attitudinal, screening, outcomes, resource allocation, and education of clinicians.

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.

QUALITY AND EFFICIENCY OF PALLIATIVE CARE ACROSS THE CONTINUUM: MEETING THE CHALLENGE

Globally, palliative care as a field is now beginning to define quality outcomes with respect to interventions and linkages.^29–32 Integration of ED patient care into these initiatives is not well established. After an introductory review of the state of evidence, the PCWG identified high-impact research areas that would move the field forward with respect to quality and safety. PCWG leaders collated a list of key questions that arose during the session. Thematically, participants identified four critical questions for palliative care and EM research: 1) which patients are in greatest need of palliative care services in the ED, 2) what is the optimal role of emergency clinicians in caring for patients along a chronic trajectory of illness, 3) how does the integration and initiation of palliative care training and services in the ED setting affect health care utilization, and 4) what are the educational priorities for emergency providers in palliative care? Discussions of these four questions focused on six domains of research: 1) descriptive, 2) attitudinal, 3) screening, 4) outcomes, 5) resource allocation, and 6) education of clinicians (Table 1).

Table 1.

Summary Research Priorities: AHRQ Palliative Care Workgroup with supporting geriatric research agendas

Domain	Description	New Frontiers—Geriatric Emergency Medicine (Emerg Med num)8/Geriatric Core Competencies5
Descriptive	Accurate characterization of ED and prehospital patients with acute severe and advanced chronic serious illness.	Emerg Med 2 (Level A): Randomized controlled trials are needed to assess the effectiveness of interventions (e.g., educational models, standardized protocols) for improving quality of care of older ED patients. Emerg Med 4 (Level A): Following evidence-based identification of target areas for improvement, controlled studies of the effect of alterations in the microenvironment on outcomes for older ED patients should be performed. Such studies likely cannot be based on random assignments of individuals to interventions; rather, whole microenvironments will have to be compared. Emerg Med 37 (Level B): Systematic reviews and, when possible, meta-analyses are needed to summarize the best available diagnostic, prognostic, and therapeutic evidence with regard to care for older adults presenting to the ED. These reviews should follow established protocols, such as the Cochrane review methodology, including planned periodic updates.
Attitudinal	Further study of knowledge, attitudes, and skills barriers to effective implementation of palliative care in the emergency setting. Achieve consensus approach on the role of emergency care in palliative and end-of-life care assessment and management.	Emerg Med 35 (Level C): Systematic evaluation of training effectiveness on clinically important outcomes is needed. This evaluation should begin with an assessment of the attitudes, knowledge, and skills of residents who participate in any program to improve emergency care for older adults.
Screening	Identification of valid and reliable ED focused palliative care screening tools and triggers that drive quality of care.	Emerg Med 16 (Level B): Studies are needed to develop brief screening instruments for specific conditions for use with older patients in the ED.
Outcomes	Assessment of value added to care when palliative interventions are initiated in the emergency setting. Assessment of interventions initiated in the emergency setting and their summative impact.	Emerg Med 34 (Level A): Randomized controlled trials with blinded outcome assessors and controlled interventions are needed to study whether measures to improve clinical outcomes in the ED can simultaneously reduce service utilization rates of older adults. Emerg Med 42 (Level A): Randomized trials based on results of studies in Emerg Med 41 should be conducted to evaluate the effectiveness of home care in selected older patients.
Resource Allocation	Assess and establish optimal internal and external resources and linkages in the emergency setting to deliver quality palliative and end-of-life care.	Emerg Med 33 (Level C): Prospective studies are needed to evaluate communication between the ED and primary physician, and assess the relation of outcomes to the exchange of information, follow-up interval, and patient satisfaction toward services rendered. Emerg Med 41 (Level B): Randomized trials are needed to assess alternatives to inpatient management of selected conditions in appropriate subsets of acutely ill older adults and to assess optimal candidate selection, patient and caregiver satisfaction scores, cost-effectiveness, mortality, and functional outcomes in varying health care settings.
Education for Clinicians	Establish core competencies and competency evaluation for elements of palliative care. Assessment of the availability and impact of educational programs for ED clinicians.	Section IV: Transitions of Care5 Rapidly establish and document an elder’s goals of care for those with a serious or life-threatening condition and manage accordingly (Element 21). Assess and provide ED management for pain and key non pain symptoms based on the patient’s goals of care (Element 22). Know how to access hospice care and how to manage elders in hospice care while in the ED (Element 23).

AHRQ = Agency for Healthcare Research and Quality.

RESEARCH AGENDA FOR PALLIATIVE AND END-OF-LIFE CARE IN THE ED: DARING TO REACH

Research is needed across the palliative care continuum to optimize quality of life for eligible patients. At a minimum, one focus should be during the end of life period, where disease burden increases, increased episodes of ED visits and hospitalized care are typically observed, and significant health care resources are expended. Prospective identification of this period is challenging for all, but especially for emergency clinicians who do not have the benefit of longitudinal care. Study designs needed to evaluate this may vary from large, individual and group-randomized trials to observational cohort studies and also may require the use of qualitative methods. We frame this agenda in the context of its limitations as identified by a small working group, but draw important parallels of this agenda to other group findings in Table 1. The PCWG identified the following palliative care research priorities in ED patients with chronic, progressive, advancing illness in the general ED population.

Descriptive

Accurate Characterization of ED and Prehospital Visits of Patients With Chronic, Serious, Advanced Illness

Overall, little comprehensive information is known about the epidemiology of patients with cancer and noncancer terminal illness who are treated in United States EDs or the prehospital care system during their last days, weeks, months, or year of life. Large population-based data sets with respect to palliative care in the ED have been collected internationally (i.e., United Kingdom and Canada), but it is unclear if those descriptors can be generalized across different health care systems.^15,33,34 Characterization of local and national U.S. ED and emergency medical services (EMS) clinical care encounters by patients with advanced terminal illness are needed to provide information on the size and resource utilization of these patients as they decline during illness. A description of the variation of these data between and across communities and EDs will provide insight to target areas for quality improvement. An understanding of the treatments these patients may receive, and identification of priorities for system improvement, will better align the mutual goals of emergency and palliative care.

Attitudinal

Further Study of Knowledge, Attitudes, and Skills Barriers to Effective Palliative Care in the ED Setting

Clinician knowledge, attitudes, and skills were globally perceived by the PCWG as factors essential to address the key questions identified. Little is known about the level of knowledge and expertise ED clinicians (physicians, nurses, or EMS personnel) have in palliative and end-of-life care. During prehospital care, only 6% of all EMS systems have palliative care protocols.³⁵ Yet fundamental hospice and palliative care knowledge and skills, including pain and symptom management, are required elements in ED resident training.³⁶ Nonetheless, data suggest that ED nurses and clinicians feel unprepared to meet palliative care needs of patients and families, with some even questioning the role of palliative care in the ED setting.^37–40 Understanding the current state of knowledge in palliative care among ED clinicians who encounter and treat patients across the chronic illness trajectory, including the end of life, will be essential. Curricula with corresponding competencies will need to be evaluated against overall quality of care and resource utilization.

Achieve Consensus on the Role of the ED in Palliative Care Management

ED care systems must define the role of ED clinicians and enable them to comfortably provide palliative care appropriate for the emergency setting. Some emergency clinicians may feel that management of intense palliative care patients, particularly near end-of-life, is inappropriate in the ED setting. Once a patient has presented to the ED, it is often assumed that life-extending therapies are desired. Therefore, some clinicians believe the ED setting is not an appropriate venue to renegotiate this course. Yet the ED visit may be seen as a sentinel event in chronic disease and a unique opportunity to take action to initiate ED-based palliative care interventions. Consensus and evaluation of how emergency care can support palliative care is needed. It should also be considered how palliative care can support the needs of emergency care; for example, ensuring that care plans are available to emergency physicians when a palliative care patient presents to the ED and that the palliative care physician (or group) is reachable to determine the most appropriate patient-centered approach. A similar model and methodology should be used to develop ED palliative care core competencies, as was used to generate the geriatric core competencies for geriatric emergency care.⁵ Stakeholders should include emergency providers, emergency care organizations, a broad mix of non-emergency care providers who regularly deliver palliative care and also patient groups to ensure consumer engagement. Examples of ED-based palliative care interventions may include: 1) early ED referral of patients to hospice or palliative care inpatient and out-patient services, 2) initiation or completion of advance directives, 3) creation and institution of documentation templates that define goals of care, 4) spiritual or psychological referrals of patients and caregivers, and 5) direct transfer from the ED to inpatient hospice or palliative care services. While evidence suggests that early consultation from the ED to hospice or palliative care services affects outcomes and resource utilization in patients potentially eligible for palliative care services, this has not been widely studied, nor have models been widely disseminated.²¹

Screening

Identification of Valid and Reliable Palliative Care ED Screening Methods to Identify Patients in Need

There are a number of palliative prognostic scores and scales^41–44 that identify patients with life-limiting prognoses, as well as well-recognized hospice referral criteria guidelines,^45,46 yet support tools for ED palliative care consultation have not been rigorously evaluated, nor widely adopted. In the age of clinical decision rules, ED clinicians may desire an ED palliative care prediction rule similar to the “PORT score” or “Ottawa Ankle Rules.”^47,48 Such a decision tool could provide support in determining whether the probable need for palliative care interventions in the ED was “low, medium, or high.” These types of screening tools should be able to differentiate between patients in the ED who require a semiurgent palliative care intervention within 24–72 hours, from those requiring an urgent intervention during the next 3 hours. Ideally, those patients identified as “high” probability, and requiring an urgent palliative care intervention, would be those at their end of life. Ideally, these decision rules would be integrated into clinical decision support systems embedded in the electronic medical record to ensure that they are translated into practice.⁴⁹

Outcomes

Assessment of Value Added to Care When Palliative Interventions Are Initiated in the ED Setting

The critical question may not be whether patients would benefit from palliative care services or interventions in the ED, but rather if there is evidence-based support for these interventions and their association with patient outcomes, quality of care, and cost. Validated tools and screens that assess high-impact areas of need or assist in predicting outcomes are beginning to appear.^19–21 In hospitalized patients, could the referral to palliative care be completed by the admitting physician? Are there differences in palliative care outcomes between an ED referral versus one by the admitting physician at 24 or 48 hours? Because the ED is a resource-constrained environment, increasing the scope of ED practice to include palliative care will require further study of patient outcomes in both large academic EDs and smaller community EDs. An example of such an evaluation may include comparison of palliative care consultation outcomes initiated earlier in the ED, versus those later during a hospital admission.

Resource allocation

Assessment of Internal and External Support Services Needed to Deliver Quality Care

To provide optimal palliative care, emergency services will need to partner with community agencies and service providers skilled in the care of the chronically ill, as well as internal and external hospital-based hospice and palliative care providers. Currently, 40% to 81% of U.S. hospitals have palliative care services, many in various stages of development.² Systematically, little is known about how these services interface with the ED. While some EDs have partnered with local hospices or other care systems to enhance ease of transition to hospice care from the ED, it is not known how numerous or extensive these partnerships are.^21,50,51 Hospital administrators who fund hospital-based palliative care services will require data to support expansion of palliative care services from the ICU and general wards to also include the ED. Consensus guidelines for palliative care consultation service metrics currently identify the number of consultations from the ED as a metric to be tracked by services.⁵² Local ED administrators will need to be familiar with these metrics and whether or not services are available to the ED. This will help hospital-based programs advocate for expanded palliative care services to the ED.

Education of clinicians

Assessment of Current Education Curricula, Competencies, and Programs for ED Clinicians of All Disciplines in Palliative Care

End-of-life care training is a part of EM practice.³⁶ Additionally, competency assessment across multiple disciplines (e.g., emergency nursing, advance practice nurses and midlevel providers, social work, prehospital care) will be needed to deliver the highest quality of care. Since 2007, the Education in Palliative and End of Life Care-Emergency Medicine Project (http://www.epec.net/), funded by the National Cancer Institute, has provided ED clinicians with the knowledge and skills to care for patients with palliative and end-of-life care needs and has taught over 150 emergency clinicians a set of core palliative care skills for use in the emergency setting. The Emergency Nurses Association has offered a number of palliative care education programs for ED nurses. Currently, only a few protocols for EMS clinicians exist regarding palliative care.³⁵ The subspecialty of Hospice and Palliative Medicine is the most recent American Board of Medical Specialties subspecialty available to emergency physicians, affording the opportunity for training and certification in palliative medicine. This certification will build a cadre of emergency physicians who can understand not only palliative medicine, but the complex system of ED care. Currently there are fewer than 20 subspecialty board-certified emergency physicians in hospice and palliative medicine in the United States. The ED work-force that will proceed to postgraduate fellowship training in hospice and palliative medicine will emerge with specialized dual training and skills that will undoubtedly advance palliative care in the ED. More research is needed to: 1) assess the desire and support of EM trainees for palliative medicine training, 2) ensure hospice and palliative medicine fellowship training programs find EM applicants desirable, 3) examine what type of careers these trainees pursue, and 4) evaluate the effect these trainees may have on care outcomes in the fields of emergency and palliative medicine.

CONCLUSIONS

This article represents the consensus of the Palliative Care Workgroup at the 2009 conference titled, “Improving the Quality and Efficiency of Emergency Care Across the Continuum: A Systems Approach,” which focused on creating a research agenda around palliative care in the ED. There are inherent limitations in the workgroup, as the opinions here are limited to one group of stakeholders interested in quality and efficiency. However, the group concluded that the integration of quality palliative care into routine emergency practice will require a paradigm shift in care delivery, where comprehensive ED palliative care is a core element of practice that may be supported by the proposed research priorities in the following six categories: descriptive, attitudinal, screening, outcomes, resource allocation, and education of clinicians. Similar paradigm shifts have occurred in the areas of injury prevention and control, where the ED is regarded as a place to explore interventions in intimate partner violence, smoking cessation, and seatbelt use to gain long-term benefits to patients and health care systems.^53–56 Clinicians now find it commonplace to ask about domestic violence or encourage seatbelt use as key components of good care with a significant public health impact.

Emergency departments can serve as a unique and critical link to identifying patients in need of palliative care services, particularly at the end of life, when physical, psychological, social, and spiritual symptom burden may be high, stress on caregivers can be extreme, and the need for care coordination is the greatest. It is strongly recommended that screening tools and markers identifying patients in the end-of-life phase be developed and tested in the emergency setting with a broader goal of identify multidimensional interventions to manage suffering of patients and families. This shift will be aided by a focused assessment of the ED’s current role during palliative and end-of-life care, the development of evidence-based ED criteria that assist the emergency clinician with identification of patients on an end-of-life trajectory and the testing of ED-specific interventions that synergizes care among the community, outpatient, and inpatient setting to provide optimal palliative care.