Data from emergency medicine palliative care access (EMPallA): a randomized controlled trial comparing the effectiveness of specialty outpatient versus telephonic palliative care of older adults with advanced illness presenting to the emergency department

Emergency departments are frequently visited by severely ill patients approaching the end of life; in a study of older adults who died between 1992 and 2006, 75% visited the emergency department during the last six months of life [1]. Although the focus of emergency medicine has traditionally been the diagnosis and treatment of acute illnesses and injuries, emergency clinicians have identified a growing need for palliative care interventions in the emergency setting to address the symptoms and stresses of advanced chronic illnesses [2, 3].

Palliative care is defined by the World Health Organization as “an approach that improves the quality of life (QOL) of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.” [4] Palliative care has been shown to improve patients’ symptoms and QOL across a broad range of serious, life-limiting illnesses. Patients receiving palliative care are often able to remain cared for and supported at home, resulting in greater patient and family satisfaction and less prolonged grief and post-traumatic stress disorder among bereaved family members [5‐10]. Palliative care also decreases healthcare-related costs by reducing unnecessary hospitalizations, interventions, and avoidable ED and intensive care [11‐15].

In cancer patients, randomized controlled trials of palliative care interventions have shown better QOL and mood, as well as improved symptom management and patient satisfaction, with palliative care in addition to standard care [12, 16]. Palliative care has its roots in the care of cancer patients at the end of life, but increasing studies support its potential to benefit patients with end-stage organ failure, such as chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF) and end-stage renal disease (ESRD), which can also cause physical, psychosocial, and spiritual distress [17, 18].

While both cancer and end-stage organ failure patients stand to benefit from palliative care, the illness trajectories associated with advanced cancer differ from those of organ failure [19]. Cancer patients commonly have a short period of evident decline before death; however, patients with end-stage organ failure have a pattern of long-term decline with episodes of worsening and remission [18]. Efforts to integrate palliative care screening and assessment into the emergency department have yielded positive outcomes, yet further research is needed to identify specific effective interventions [20]. Understanding aspects of patients’ experiences of advanced chronic diseases, such as quality of life and symptom burden, at the time of their presentation to the emergency department could assist emergency providers as they develop patient-centered treatment plans. We are not aware of any literature describing how the distinct trajectories of advanced cancer and end-stage organ failure patients manifest in the ED.

This paper reports on a large, multicenter, parallel, two-arm randomized controlled trial in ED patients comparing two established models of palliative care: nurse-led telephonic case management and specialty, outpatient palliative care. The objectives of this paper are to: 1) report preliminary baseline demographic and QOL data for the EMPallA trial cohort, 2) identify the association between illness type and baseline QOL while controlling for other baseline factors, and 3) explore the baseline relationships between illness type, symptom burden, and loneliness.

This report demonstrates that the EMPallA randomized controlled trial is enrolling a diverse sample of older adults with advanced illness who present to the ED. In the EMPallA trial cohort, 59% of patients identified as white and 11% identified as Hispanic or Latino. Female participants made of 54% of the cohort. Thirty-two percent of study participants had Medicare only, and 18% were dual-eligible for Medicare and Medicaid. Participants were distributed between the diseases of interest; cancer was the most common diagnosis at 41% and ESRD the least common at 20%. Notably, the EMPallA trial includes patients with multiple chronic conditions, whom are often excluded from randomized controlled trials [33]. Thirteen percent of study participants met eligibility criteria for two or more serious, life-limiting illnesses, and we suspect that many more have multiple conditions that are less severe. The demographics of the patients in the EMPallA study are similar to those reported in 2017 by the Centers for Disease Control and Prevention from a representative sample of ED visits in the US [34].

In this large, multi-center randomized controlled trial in ED patients, we observed important differences in baseline QOL when stratifying by disease type and controlling for demographic variables. QOL was low for all study participants, which is consistent with their advanced illness status and suggests they may particularly benefit from palliative care interventions. When comparing illness types, patients with organ failure had worse QOL on all FACT-G subscales and the overall FACT-G score as compared with cancer patients. Additionally, patients with organ failure had higher symptom burden and more loneliness than cancer patients. One reason this might be the case is that cancer patients presenting to the ED have previously been healthy and are just starting the rapid end-of-life decline in functional status, whereas organ failure patients have experienced repeated episodes of exacerbations and remissions [19]. Patients with CHF and COPD have been shown to have more hospital admissions and ED visits than cancer patients in the last months of life, which could contribute to poorer QOL [35]. Similarly, patients with ESRD tend to have lower rates of advance care planning, higher treatment intensity, and similarly high symptom burden in the last year of life compared to cancer patients [36].

Our model also indicated that meeting inclusion criteria for multiple advanced illnesses was independently associated with a poorer QOL. This is consistent with prior studies; a meta-analysis of 74 studies showed that an individual’s QOL decreases with each additional illness [37]. Additionally, we found that older age is associated with improved QOL. We are unsure about why this is, but hypothesize it might be because patients who have lived longer have likely experienced less serious illness during their lifetime.

To our knowledge, this is the first large, multicenter trial enrolling older adults with multiple different advanced illnesses from the ED. While the distinct disease trajectories of patients with cancer and end-stage organ failure have been elucidated in other settings, this report is unique in presenting a snapshot of the distinct trajectories at the time of an ED visit. The differences by illness type in QOL, symptom burden, and loneliness seem to reflect the sudden deterioration of cancer patients at the end of life versus the undulating decline of those with organ failure [19].

For older adults with serious illness presenting to the ED, we have demonstrated that QOL, symptom burden, and loneliness differ by illness type, suggesting that palliative care needs may differ by disease category as well [38]. For this reason, the subgroup analyses by illness type in the final EMPallA analysis will be important in determining how to interpret the primary outcome of the study for patients of different illness types and in designing future palliative care interventions that benefit particular disease types. Despite similar symptom burdens, illness experience, and survival rates between advanced cancer and end-stage organ failure, much of the attention directed toward improving end-of-life care has focused on cancer patients [17, 35, 36, 39]. This report highlights the need for more disease-specific research to improve patient-centered outcomes for those with end-stage organ failure presenting to the ED. Additionally, since patients with multiple chronic conditions have particularly low QOL, future research should focus on developing palliative care interventions to target these patients, as well as screening and referral protocols to be used by ED providers.

A strength of our study is that it is enrolling a large national cohort with a rich set of baseline demographic variables and patient-reported outcome measures. Its inclusive inclusion criteria facilitate recruitment of diverse patients. Additionally, by including patients with both cancer and end-stage organ failure, palliative care interventions can be assessed in unique disease processes.

Nevertheless, our study has various limitations. Only about 50% of patients who are approached are willing to enroll in the study. Patient refusal or failure to follow up could result in a non-response bias, where enrolled patients are those open to trying palliative care. Additionally, this study is limited to four specific diseases, only recruits English- and Spanish-speaking patients, and is conducted within the US, meaning it may not be generalizable to patients outside these demographics. Finally, all outcomes are self-reported rather than objectively measured. However, patient-reported outcomes are commonly used in palliative care and are validated to measure QOL and symptom burden [24, 25].

The EMPallA trial is enrolling a diverse sample of ED patients. The lower QOL, increased symptom burden, and increased loneliness found in end-stage organ failure patients versus cancer patients demonstrates how distinct disease trajectories manifest in the ED.