An Assessment of the Management of Patients with Advanced End-Stage Illness in the Emergency Department: An Observational Cohort Study

Abstract

Background:

Presentations to the emergency department (ED) by patients with end-of-life (EOL) conditions for their acute care needs are common.

Objectives:

The objective of this study was to identify and describe the ED management across presentations to the ED for EOL conditions.

Design:

Prospective observational cohort study.

Settings/Subjects:

Emergency physicians in two Canadian ED's were asked to identify presentations by adult patients with EOL conditions using a modified screening tool.

Measurements:

Patient characteristics and ED management for each presentation were collected through chart review by trained research assistants. Descriptive analyses were conducted as appropriate and bivariate comparisons of dichotomous and continuous variables were completed using χ² tests and using t test or Wilcoxon rank-sum test, respectively.

Results:

Physicians identified 663 ED presentations for EOL conditions, with advanced cancer (41%), dementia (23%), and chronic obstructive pulmonary disease (16%) being the most common EOL conditions. The majority of presentations involved consultations (77%), hospitalization (65%), and numerous investigations (97%), including blood work (97%) and imaging (92%). The majority of patients with EOL conditions had a history of ED visits (68%). Using a modified screening tool, 78% of presentations involved patients with unmet palliative care needs, but only 1% of presentations involved a palliative consultation or admission to a palliative care unit.

Conclusion:

Presentations to the ED for EOL conditions involve significant ED resources; however, only a handful of patients are referred to palliative services. Patients with EOL conditions are appropriate targets for palliative services and community support outside the ED.

Introduction

Presentations to the emergency department (ED) by patients with advanced or end-of-life (EOL) conditions are increasingly common.^1,2 Many of these patients present to the ED for assistance in managing their acute symptoms (e.g., pain, delirium, etc.), but are more often in need of long-term palliative care focusing on improving quality of life by mitigating suffering through management of physical, psychosocial, and spiritual needs.³ Given the increased clinical and social complexity of patients with EOL conditions, gaining a better understanding of the ED management and resources needed to provide care could help identify potential gaps in care and opportunities to improve care. A scoping review, which identified studies assessing ED management for patients with EOL conditions, reported that many details regarding care delivery are infrequently reported.⁴ The evidence that is available suggests that patients with EOL conditions utilize extensive investigations and imaging, and are often hospitalized.^5,6 Several studies have also shown that patients with EOL conditions often have unmet palliative care needs, which is indicative of poor prognosis, and represents an opportunity to seek consultations.^7–10 To gain a better understanding of the ED management for patients with EOL conditions, the objective of this study was to identify presentations for EOL conditions to two Canadian EDs and describe the characteristics of the patients and their management.

Methods

Ethics

The study protocol and materials were approved by the Health Research Ethics Board (Reference ID: Pro00078882) at the University of Alberta and by Covenant Health, both in Edmonton, Alberta, Canada. The project scored under minimal risk under the Alberta Research Ethics Community Consensus Initiative and was granted access to medical records to conduct chart reviews. Written informed consent was obtained from all physician participants.

Study setting and design

This six-month (March–August 2018) prospective cohort study was implemented at two EDs located in Edmonton, Alberta, Canada (population ∼1 million), which are two of seven high-volume EDs within the region. The University of Alberta Hospital is a major urban, academic, tertiary care center assessing ∼75,000 adult patients per year with an admission proportion of 23%. The Grey Nuns Community Hospital is a mixed adult and pediatric urban hospital assessing ∼70,000 patients per year with an admission proportion of 12%. Both sites are staffed with full-time emergency physicians, are teaching sites for emergency and other residency and fellowships, and have palliative consultative services. The Grey Nuns Community Hospital also has a designated palliative unit.

Study participants

Emergency physicians at each study site were invited to participate by completing a paper-based modified screening tool^9,10 (Supplementary Appendix A1) to identify presentations made by patients they believed presented with one or more of the eligible EOL conditions. Patients were eligible if they were 17 years of age and older and presented to the ED with life-limiting or life-threatening conditions, including cancer, chronic obstructive pulmonary disease (COPD), chronic kidney failure (CKF), heart failure (HF), cirrhosis, dementia, and other progressive central nervous system (PCNS) diseases (e.g., multiple sclerosis, Parkinson's disease, and Amyotrophic lateral sclerosis). Physicians were instructed not to screen any patients handed over to them by another physician for EOL conditions to avoid double counting the same presentation. Otherwise, all ED presentations made by patients with EOL conditions during the study period were eligible for inclusion into the study. In some cases, based on the triage notes using the Emergency Department Information System (EDIS), a research assistant identified potentially eligible patients, who then confirmed whether the presentation was for an EOL condition with the attending physician.

Screening tool and process

Modifications to a preexisting screening tool^9,10 were completed by a panel of physicians with specialties in emergency medicine, intensive care, nephrology, and internal medicine, as well as palliative care specialists, methodologists, and a clinical epidemiologist (Supplementary Appendix SA1). First, patients with septic shock and other conditions with a high chance of accelerated death were excluded from screening, as the panel hoped to identify patients who may benefit from palliative services rather than patients who were imminently dying. In addition, to gain a better understanding of presentations to the ED for progressive neurological diseases, the screening tool was modified so that physicians could identify patients with advanced dementia separately from patients with other advanced PCNS conditions (e.g., multiple sclerosis, Parkinson's disease amyotrophic lateral sclerosis, etc.). The screening tool was also modified to include additional clinical criteria for several of the eligible EOL conditions to assist physicians (Supplementary Appendix SA2).

Additional questions were added to the screening tool to explore barriers to providing care, whether the patient presented with goals of care (GOC) documentation, and the opinions of treating physicians on the appropriateness of each patient's current GOC based on their presenting condition. A patient's GOC, often referred to as Advance Care Planning, represents a bidirectional discussion about the level of intervention requested for future care in the event of deterioration. In Alberta, GOC designations include R (resuscitative care), M (full medical care with transfer to acute care), and C (comfort care without a goal to prolong life), and within each GOC designation are different levels of care (Supplementary Appendix SA3). For example, patients and their families choosing an M GOC designation can specify a designation of M1 (interventions for symptom control, including site transfer for higher level of care, excluding intensive care unit [ICU] care) or M2 (interventions for symptom control without ICU care, surgery, or site transfer for higher level of care). See Supplementary Appendix SA3 for additional details regarding the different levels of care between the GOC designations.

For each presentation with an EOL condition with at least one of the eligible end-stage conditions listed on step 1 of the screening tool (e.g., cancer, COPD, CKF, HF, cirrhosis, dementia, and other PCNS conditions), emergency physicians completed step 2 of the modified screening tool, in which they identified risk factors for unmet palliative needs for each ED presentation (Supplementary Appendix SA1). Risk factors for unmet palliative needs included frequent ED visits or hospitalizations in the past six months, uncontrolled symptoms, functional decline, uncertainty/distress about GOC and/or caregiver distress, and a response to the Surprise Question (SQ; the physician would not be surprised if the patient died within 12 months). Patients were considered to have unmet palliative needs if they presented with one or more clinical condition, along with two or more risk factors for unmet palliative needs.^9,10 Physicians completed the screening tool for all presentations they identified with EOL needs regardless of whether or not the patient had previously presented to the ED during the study period.

Data collection

Completed screening forms were retrieved by research assistants and the results were entered into REDCap (Vanderbilt University, Nashville, TN).¹¹ For each patient successfully screened using the modified screening tool, supplemental data were collected from patients' paper charts and from EDIS. We extracted characteristics of the presentations, including patient demographics, mode of arrival to the ED, presenting triage score (as measured at both hospitals by the Canadian Triage and Acuity Scale [CTAS]),¹² ED length of stay (time from triage to discharge), time to assessment (time from triage to be seen by attending physician), and presenting complaint, which is assigned by the triage nurse based on the EDIS presenting complaint list.^13,14

To characterize the management of presentations for EOL conditions, reviewers extracted data, including consultations requested in the ED, medications administered, investigations (i.e., laboratory and diagnostic tests, including blood work, urinalysis, microbiology, imaging, and electrocardiogram), and procedures (i.e., invasive or noninvasive ventilation, paracentesis, thoracentesis, and intubation) requested. Patient disposition, mortality in the ED or within hospital during the index visit, and posthospital referrals were extracted. Using the EDIS tool, the proportion of patients with subsequent visits to the ED within 30 days of discharge from the ED or hospital as well as patients with a history of ED visits six months before their index ED presentation were recorded.

In addition, research assistants extracted whether or not the patient had formal GOC upon arrival to the ED and hospitalization as documented in the patient chart by the physicians/nurses or, if available, by a document referred to as the “green sleeve,” which documents the patient's formal GOC. Duplicate data extraction was completed on the first 10 charts and reviewed by clinical research nurse to identify potential disagreements and ensure a unified data collection methodology.

Statistical analysis

Descriptive data are reported using proportions for categorical variables, while continuous variables are reported using means with standard deviations (SDs) or medians with interquartile range (IQR), as appropriate.

Bivariate analyses of dichotomous (proportion of patients with return or previous ED visits) and continuous variables (median number of return or previous ED visits) were completed using χ² tests and using t test or Wilcoxon rank-sum test, respectively. We conducted an assessment of whether patients with a specific EOL condition or having a single or two or more EOL conditions were associated with an increase/decrease in return ED visits within 30 days after discharge or were more likely to have visited the ED in the previous six months. In the assessment of patients with specific EOL conditions, the analysis consisted of two groups, the first being patients with a specific EOL condition (i.e., advanced cancer) and with the second group consisting of the remaining patients with other EOL conditions. Patients with a single EOL condition were compared to patients with two or more EOL conditions. An unadjusted logistic regression for the dichotomous outcomes was reported using odds ratios (ORs) with 95% confidence intervals (CIs). All analyses were performed using Stata version 15 (StataCorp, USA) and a statistical significance level was set at p < 0.05. Missing data were excluded from the analysis.

Data analysis for specific variables such as demographics, mortality, previous ED visits, and return ED visits was based on the number of unique patients enrolled. The analysis for the ED outcomes was based on the total number of presentations for EOL conditions identified by the participating physicians.

Sample size calculation

We estimated ∼6000 ED presentations would be necessary to identify 600–1200 presentations for EOL conditions. With an estimated 200–400 presentations for EOL conditions identified per site, the 95% CI of the high (≥90%) and low (≤10%) estimates of EOL presentations would be ±4%–3%, whereas the 95% CI of the moderate estimates of presentations (∼50%) would be ±7%–5%, respectively. The total number of presentations attended by participating emergency physicians during their shifts was estimated using EDIS.

Results

Physician recruitment and demographics

A total of 45 out of 60 (75%) physicians across the two EDs agreed to participate. The physicians were predominantly male (71%) with an average age of 41 years (SD: 9.30). The participating physicians were trained in emergency medicine with either a Fellowship from the Royal College of Physicians and Surgeons of Canada (47%) or certification from the College of Family Physicians of Canada (46%). Approximately half of physicians reported more than 10 years of emergency medicine practice experience. The median number of presentations for EOL conditions identified by the participating physicians was 19 (range: 0–28).

Identification of EOL presentations

Participating physicians attended to a total of 26,328 ED presentations across both sites during the study period, of which physicians identified 663 (2.5%) presentations for EOL conditions (University of Alberta Hospital = 4.6%; 488/10510 vs. Grey Nuns Community Hospital = 1.1%; 175/15818). The 663 presentations were made by 627 unique patients, most of whom only made a single presentation for an EOL condition during the study period (594/627 [95%]). The majority of patients with multiple presentations during the study period had two presentations (30/33 [91%]), and the overall time between the first and second visit was 30.5 days (IQR: 8.5–46.5).

Patient characteristics

There was an equal sex distribution (51% female), with a median age of 76 years (IQR: 63–85) among the patients identified in the study (Table 1). Advanced cancer was the most common EOL condition across all of the presentations (41%), followed by dementia (23%), COPD (16%), HF (9%), CKD (9%), PCNS disease (9%), and cirrhosis (7%). The majority of presentations involved patients presenting with a single EOL condition (87%), while the remaining presentations involved patients with two or more EOL conditions (13%) (Table 1). Nearly 60% of patients arrived to the ED through emergency medical services and the most common presenting CTAS scores were 3 (48%) and 2 (41%). Shortness of breath was the most prevalent presenting complaint (21%) followed by general weakness (12%) and abdominal pain (9%). Established GOC were documented in the patients' ED charts of nearly two-thirds of patients (66%), with the most commonly documented designation being M1 (51%). Among the 33 patients who made multiple ED presentations during the study period, 45% (n = 15/33) of patients did not have formal GOC documented in their charts during the initial visit, but did have established GOC in their second visit.

Table 1.

Demographics and Clinical Characteristics of the 663 Presentations to the Emergency Department for End-of-Life Conditions Identified during the Study Period

Variable	Total presentations, n = 663 (%)
Age, years, median (IQR)^a	76 (63–85)
Female sex,^a n/N (%)	326/627 (52)
Condition, n (%)	n = 663
Cancer	272 (41)
COPD	107 (16)
CKD	59 (9)
HF	62 (9)
Cirrhosis	49 (7)
Dementia	151 (23)
PCNS disease	59 (9)
Single EOL condition	578 (87)
≥2 EOL condition	85 (13)
CTAS, n (%)	n = 663
1	33 (5)
2	274 (41)
3	320 (48)
4	36 (5)
5	0 (0)
Most common presenting complaint, n (%)	n = 663
Shortness of breath	141 (21)
General weakness	76 (12)
Abdominal pain	59 (9)
Altered level of consciousness	28 (4)
Fever	24 (4)
Abnormal laboratory values	24 (4)
Other presenting complaints	311 (47)
Goals of care, n (%)	n = 663
GOC on arrival to ED	437 (66)
M1	221 (51)
R1	99 (23)
R3	34 (8)
Other	83 (19)
GOC upon admittance	291/424 (69)
M1	136 (47)
R1	68 (23)
C1	31 (11)
Other	56 (19)

A total of 627 unique patients after adjusting repeated ED visits.

C, comfort care; CKD, chronic kidney disease; COPD, chronic obstructive pulmonary disease; CTAS, Canadian Triage and Acuity Scale; ED, emergency department; EOL, end of life; GOC, goals of care; HF, heart failure; IQR, interquartile range; M, medical care; PCNS, progressive central nervous system diseases (excluding dementia); R, resuscitative care.

Results of the screening tool

Based on the modified screening tool, 78% of the presentations for EOL conditions met the criteria for unmet palliative needs (Table 2). The most common risk factors for unmet palliative needs identified across the presentations was a positive response to the SQ (68%), followed by uncontrolled symptoms (55%), and frequent ED visits/hospitalizations in the previous six months (54%) (Table 2). Physicians reported challenges in providing care for 24% of the presentations, which was most commonly due to a language barrier (34%) or cognitive impairment (34%) (Table 2). Physicians reported that 62% (n = 396/637) of the presentations involved patients with formal GOC, of which physicians were of the opinion that the patient's GOC was appropriate for more than half of the patients (235/396 [59%]), considering their current condition. Experienced ED physicians felt up to a third of these GOC were discordant with the presentation.

Table 2.

The Application of a Modified Screening Tool for End-of-Life Conditions by Participating Physicians during the Study Period

Variable	Total presentations, n = 663 (%)
Presentations with unmet palliative needs, n (%)	518 (78)
Risk factors for having unmet palliative needs, n (%)	n = 663
Frequent visits	356 (54)
Uncontrolled symptoms	362 (55)
Functional decline	298 (45)
Uncertainty of GOC and/or caregiver distress	123 (19)
Surprise question	452 (68)
GOC, n (%)	n = 637
Patient with established GOC	396 (62)
Appropriate GOC	235 (59)
Challenges providing care, n (%)	n = 141
Language barrier	46 (34)
Dementia	46 (34)
Unable to communicate (intubated, etc.)	11 (8)
Unable to communicate (health issues)	10 (7)
Other	7 (5)
Language + dementia	6 (4)
Nonverbal	6 (4)
Hearing impairment	2 (2)
Agitated delirium	2 (2)

ED management

The median time to physician assessment following triage was 1.5 hours (IQR: 0.64–3.12), while the overall median ED length of stay was 10.7 hours (IQR: 7.45–16.82). The majority of presentations involved an ED-based consultation (77%), with the commonest services being Internal Medicine (25%) and Family Medicine (21%) (Table 3). Only 1% of ED-based consultations were documented as palliative consultations. While the majority of presentations involved a single consultation (73%), 27% of presentations involved two or more consultations in the ED. The majority of presentations involved medical treatment (84%), with antibiotics being the most common medication prescribed (35%), followed by opioids (34%) (Table 3). Almost all the presentations involved at least one investigation during their ED visit (97%) with blood work (97%), imaging (92%), and electrocardiogram (58%) being the most common investigations (Table 3). An estimated 11% of presentations involved various medical procedures, with noninvasive positive pressure ventilation (43%) and intubation (30%) being the most common.

Table 3.

A Descriptive Summary of Emergency Department Management and Consultations in the 663 Presentations for End-of-Life Conditions Identified by Physicians during the Study Period

Variable	Total presentations, n (%)
Length of stay in hours, median (IQR)	n = 663
ED length of stay	10.67 (7.45–16.82)
Median time to physician assessment	1.45 (0.65–3.12)
Mode of arrival to the ED, n (%)	n = 661
Emergency medical services	396 (60)
Consultations requested in ED, n (%)	n = 663
Patients receiving consult	511 (77)
No. of consults per patient, median (IQR)	1 (1–2)
1	371 (73)
2	119 (23)
3	15 (3)
≥4	6 (1)
Total specialty services consulted in the ED, n (%)	n = 672
Internal medicine	170 (25)
Family medicine	140 (21)
Gastroenterology	45 (7)
Cardiology	40 (6)
Pulmonology	33 (5)
Other services	244 (36)
Medications administered in the ED, n (%)	n = 661
Patients receiving medication	559 (85)
No. of medications administered, median (IQR)	3 (2–5)
1–2 medications	219 (39)
3–4 medications	182 (33)
>4 medications	158 (28)
Most common classes of medication
Antibiotics	191 (35)
Opioids	189 (34)
Fluids/electrolytes	184 (33)
Antiemetics	155 (28)
Nonopiate analgesics	146 (26)
Investigations in ED, n (%)	n = 663
Patients with investigations done	646 (97)
No. of investigations, median (IQR)	2 (3–5)
Blood work	624 (97)
Electrocardiogram	372 (58)
Imaging	595 (92)
Plain X-ray	493/595 (83)
Computerized tomography	207/595 (35)
Other	70/595 (12)
Urinalysis	281 (44)
Microbiology	249 (39)
Other	3 (1)
Procedures in ED, n (%)	n = 661
Patients with procedures done	70 (11)
NIPPV	30 (43)
Paracentesis	21 (30)
Intubation	9 (13)
CPAP	5 (7)
Thoracentesis	2 (3)
Other	6 (9)

CPAP, continuous positive airway pressure; NIPPV, noninvasive positive pressure ventilation.

Disposition

The majority of presentations resulted in the patients being admitted to hospital (64%), with Internal Medicine (33%), Family Medicine (32%), and Pulmonary (6%) being the most common admitting services (Table 4). Only 0.9% of presentations included admission to a palliative care unit. Nearly 30% of presentations included a postdischarge referral, which included home care (32%), specialists (30%), and palliative services (26%) (Table 4). A total of 16% of the patients died during their index presentation either in the ED or in hospital, most of whom presented with advanced cancer (48%), dementia (19%), or COPD (16%).

Table 4.

A Description of the Disposition and Mortality of the 663 ED Presentations Identified by Physicians as End-of-Life Conditions during the Study Period

Variable	Total presentations, n (%)
Disposition, n (%)	n = 652
Admitted	425 (65)
Discharged	208 (32)
Transferred	16 (2)
Other	3 (0.5)
Admissions by service, n (%)	n = 425
Internal medicine	138 (33)
Family medicine	136 (32)
Pulmonary	26 (6)
Gastroenterology	20 (5)
Intensive care unit	19 (5)
Other	86 (20)
Referrals, n (%)	n = 550
Referral (years)	160/550 (29)
No. of referrals, median (IQR)	1 (1–1)
1	104/160 (65)
2	32/160 (20)
≥3	24/160 (15)
Type of referral,^a n (%)	n = 160
Home care	51 (32)
Specialist	48 (30)
Palliative care	42 (26)
Clinic/facility	29 (18)
Rehabilitation center	11 (7)
Hospice	6 (4)
Medical equipment	6 (4)
Other	4 (3)
Previous ED visits six months before index visit, n (%)	n = 581^b
Visited the ED in previous six months^c	393 (68)
No. of visits, median (IQR)	2 (1–4)
Return visits to the ED within 30 days after discharge, n (%)	n = 552^b
Visits within 30 days^c	167 (30)
No. of visits, median (IQR)	1 (1–2)
Mortality,^d n (%)	n = 627^b
Died in ED	11 (2)
Died in-hospital	88 (14)
Deaths by condition,^d n (%)	n = 99
Cancer	45 (45)
Dementia	20 (20)
COPD	16 (16)
PCNS disease	15 (15)
HF	12 (12)
CKD	10 (10)
Cirrhosis	6 (6)

Referrals for patients discharged from the ED or from hospital.

A total of 627 unique patients after adjusting repeated ED visits.

ED visits not applicable because the patient died or lived out of the province.

Included deaths occurring in the ED or in-hospital following admission during their index visit.

ED visits in the past six months

The majority of patients (68%) had visited the ED in the six months before their index presentation (median = 2 visits/patient; IQR: 1–4) (Table 4). Patients with cirrhosis (OR: 2.97; 95% CI: 1.22–7.18), CKD (OR: 2.51; 95% CI: 1.20–5.25), and advanced cancer (OR: 1.75; 95% CI: 1.18–2.47) were more likely to have previously visited the ED compared to the average proportion of patients with other EOL conditions (Table 5). Patients with dementia (OR: 0.32; 95% CI: 0.22–0.48) and PCNS (OR: 0.56; 95% CI: 0.32–0.98) were less likely to have presented to the ED in the previous six months than patients with other EOL conditions. The proportion of patients with either a single or two or more EOL conditions, who had previously visited the ED, was similar (OR: 0.88; 95% CI: 0.52–1.48).

Table 5.

Proportion of Patients Presenting to the Emergency Department with End-of-Life Conditions, Who Had a Return Visit within 30 Days or Had Previously Visited the Emergency Department within Six Months from the Index Visit Subclassified Based on Diagnosis

		Patients with	Patients with
	Total	Cancer	All other EOL conditions	OR (95% CI)	p
Return ED visits, n/N (%)	552	69/210 (33)	98/342 (29)	1.22 (0.84–1.77)	0.297
Previous ED visits, n/N (%)	581	165/221 (75)	228/360 (63)	1.75 (1.18–2.47)	0.005

		COPD	All other EOL conditions
Return ED visits, n/N (%)	552	21/86 (24)	146/466 (31)	0.71 (0.42–1.20)	0.200
Previous ED visits, n/N (%)	581	67/92 (73)	326/489 (67)	1.34 (0.82–2.20)	0.247

		CKD	All other EOL conditions
Return ED visits, n/N (%)	552	22/54 (41)	145/498 (29)	1.67 (0.94–2.98)	0.077
Previous ED visits, n/N (%)	581	44/53 (83)	349/528 (66)	2.51 (1.20–5.25)	0.012

		HF	All other EOL conditions
Return ED visits, n/N (%)	552	17/52 (33)	150/500 (30)	1.13 (0.62–2.09)	0.688
Previous ED visits, n/N (%)	581	39/56 (70)	354/525 (67)	1.11 (0.61–2.02)	0.736

		Cirrhosis	All other EOL conditions
Return ED visits, n/N (%)	552	20/41 (49)	147/511 (39)	2.36 (1.24–4.48)	0.007
Previous ED visits, n/N (%)	581	35/41 (85)	358/540 (66)	2.97 (1.22–7.18)	0.012

		Dementia	All other EOL conditions
Return ED visits, n/N (%)	552	34/129 (24)	133/413 (32)	0.68 (0.44–1.06)	0.086
Previous ED visits, n/N (%)	581	72/149 (48)	321/432 (74)	0.32 (0.22–0.48)	0.000

		PCNS	All other EOL conditions
Return ED visits, n/N (%)	552	13/52 (25)	143/500 (31)	0.75 (0.39–1.44)	0.386
Previous ED visits, n/N (%)	581	31/56 (55)	362/525 (69)	0.56 (0.32–0.98)	0.039

		Single EOL condition	2 or more EOL conditions
Return ED visits, n/N (%)	552	141/479 (29)	26/73 (36)	0.75 (0.45–1.27)	0.284
Previous ED visits, n/N (%)	581	339/504 (67)	54/77 (70)	0.88 (0.52–1.48)	0.616

Bold text signifies a significant difference between the groups.

CI, confidence interval; OR, odds ratios; CKD, chronic kidney, disease; COPD, chronic obstructive pulmonary disease; ED, emergency department; EOL, end-of-life; HF, heart failure; progressive central nervous system diseases (excluding dementia).

When compared to the median average of previous ED visits of patients with other EOL conditions, patients with cirrhosis (p = 0.003) and CKD (p = 0.001) had a significantly higher median number of ED visits in the six months before their index presentation (Supplementary Appendix SA4). Patients with two or more EOL conditions had a significantly higher median number of ED visits compared to patients with a single EOL condition (p = 0.034) (Supplementary Appendix SA4).

Repeated ED Visits within 30 days of discharge

Overall, 30% of patients returned to the ED within 30 days following discharge, accounting for 288 ED visits (Table 4). The average proportion of patients with cirrhosis who had returned to the ED following discharge was higher compared to patients with other EOL conditions (OR: 2.36; 95% CI: 1.24–4.48) (Table 5). There were no differences in the median number of ED visits among the patients based on clinical conditions or whether the patient had a single or two or more EOL conditions (Supplementary Appendix SA4).

Discussion

This prospective observational cohort study identified and characterized the management of patients with EOL conditions in two Canadian EDs. Approximately 2.5% of presentations to the ED over a six-month period were made by patients with EOL conditions, with the majority of these presentations involving significant ED resources, including medical treatment, consultations, investigations, and hospitalizations. Patients with EOL conditions were shown to experience prolonged ED stays, with some patients staying up to 17 hours. The majority of patients had a history of ED visits, particularly those with advanced cancer, CKD, or cirrhosis. Despite excluding patients with septic shock and other conditions with a high risk for accelerated death, 16% of patients died during their presentation. Based on the modified screening tool, more than two-thirds (78%) of the presentations were made by patients with unmet palliative needs, suggesting that many of the patients presenting to the ED with EOL conditions could benefit from referral to palliative services.

While this study reported that the majority of EOL presentations involved patients with unmet palliative needs, only 1% of the presentations involved an ED-based palliative consultation or admission to a palliative care unit. In addition, only a quarter (26%) of the postdischarge referrals were to palliative care services, and fewer than 5% of referrals were for hospice services. There are several potential reasons for the low proportion of patients receiving palliative services in this study. First, only palliative consultations requested in the ED were documented and as such, any consultation occurring after the patient was hospitalized was not captured. Second, palliative services are limited in this region and do not directly admit patients to an inpatient unit. Considering the evidence that palliative consultations in the ED can reduce overall length of stay,^15–17 physicians and other health care providers should consider referring patients to palliative consultations as early as possible. Third, there is evidence that some ED physicians may wait to consult palliative services until the patient is much closer to death.¹⁸ Finally, it is unclear whether the patients identified in the study already had preexisting palliative support in the community, which may have impacted the need for physicians to provide any subsequent referral to palliative services. Overall, the results of this study suggest that many more patients are presenting to the ED, who are suitable for referral to palliative services than actually receive them.

In addition to referrals to palliative services, this study also suggests that some ED patients may benefit from discussions of GOC. Based on the patient's charts, an estimated 66% of the presentations involved patients with formal GOC. It is possible that some of the patients identified during the study period may not have had an opportunity to establish formal GOC with their care provider. In addition, some patients may misunderstand that some active treatments, particularly for advanced cancer, are not curative, which may result in delays to establishing their GOC planning.¹⁹ Other studies have found that GOC are often not properly documented for patients,²⁰ which could mean that more patients had GOC than were documented in this study. While not the ideal setting, the ED presentation may serve as an opportunity to identify and discuss GOC planning with patients and their families.

Comparison to previous research

While numerous studies have identified patients with EOL conditions in the ED, details regarding their ED management are scarce.^5,21–23 A recently published scoping review found that details regarding ED management of patients with EOL conditions, including consultations, investigations, imaging, and disposition care delivery, are infrequently reported.⁴ Two recently published studies^5,6 assessing ED management of patients with advanced cancer reported similar results with this study. It is important to note that there will likely be practice variation among studies assessing ED management of patients with EOL presentations due to differences in local hospital protocols/guidelines, as well as clinical heterogeneity within the patient population.

Study strengths and limitations

This study provides an in-depth assessment of management of patients with EOL conditions in the ED, which has not been well documented in the past. There are, however, important limitations to consider. First, it is likely that this study underestimates the proportion of patients with EOL conditions presenting to the ED. Patients seen by a physician not participating in the study would not have been screened. There was also considerable variation in the number of patients screened among the participating physicians, which could be due to several factors. First, some physicians may not have been actively screening patients every shift as intended. In addition, some physicians may have primarily seen low-acuity patients, which would likely not include patients with EOL conditions. Finally, despite the availability of clinical criteria for advanced conditions, physicians were free to apply their own clinical judgment, and some physicians may have their own criteria. Many physicians have little specific training with respect to integrating palliative care principles into care of patients with chronic illness, and it is unclear how physician training and perceptions may have influenced this study.

Attempts to minimize the risk of missing eligible patients included frequently reminding physicians to screen through e-mails sent from a site champion, as well as face-to-face discussions with research assistants. In addition, research assistants attempted to identify patients and verify their eligibility with participating physicians. Physicians were aggressively recruited to participate in the study, including e-mails and presentations at local staff meetings, which resulted in recruiting 75% of available ED physicians. Overall, while it is likely that some patients with EOL conditions were missed, we believe appropriate steps were taken to minimize this risk. This study also did not evaluate the patients' understanding of their illness, the appropriateness of their GOC, and patient and family perceptions of care gaps. Involving the patient and family perspective could potentially add a layer of complexity to this study that is missing.

As mentioned previously, this study relied on the use of a screening tool along with clinical judgment, of participating ED physicians to identify patients with EOL conditions; however, this study did not verify the accuracy of the patient's clinical conditions by an independent third party. While some presentations for EOL conditions may have been misidentified, the risk was likely minimal as the majority of participating ED physicians had extensive clinical experience in the ED. In addition, we could not complete the analysis of some outcomes (i.e., change in GOC plans during ED/hospital stay) as planned due to poor reporting in the patient's charts. A review of the charts by a practitioner trained in prognostication and palliative needs would have been a useful adjuvant. Finally, this study was conducted in Canada, where access to health care is fully supported by government and no co-payments exist for ED care. As a result, ED management and disposition strategies of patients with EOL conditions may not be representative of outcomes in studies conducted in other countries.

Conclusions

Regardless of the aforementioned limitations, this is one of the first studies to provide a comprehensive assessment of the management of patients with EOL conditions in two Canadian EDs. Patients with EOL conditions utilize extensive care in the ED/hospital and are an appropriate target for interventions to provide support for patients and their families. In cases where palliative services are available, it is important that support is provided to ED staff to help identify patients in need of these services.

Footnotes

Authors' Contributions

M.K. and M.G.C. contributed to study implementation, physician recruitment, patient recruitment, data collection, data analysis, data interpretation, and article preparation. S.W.K. contributed to study implementation, study management, physician recruitment, data interpretation, and article preparation. C.V.R. contributed to the design of the study, writing the protocol, and article preparation. A.E., B.O., S.D., and A.B. contributed to securing funding, design of the study, protocol preparation, and article preparation. B.H.R. is the guarantor of the study. He secured funding, design of the study, protocol preparation, physician recruitment, study management, data interpretation, and article preparation.

Acknowledgments

We would like to thank all of the emergency physicians who volunteered to participate in the study, along with Dr. Patrick San Agustin for his assistance with physician/patient recruitment at the Grey Nuns Community Hospital. We would also like to thank Mrs. Natalie Runhram, Stephanie Couperthwaite, Esther Yang, and Dr. Daniela Junqueira for their support and assistance with the study.

Funding Information

Funding for this review was provided by the Ministry of Alberta Health, Government of Alberta. Dr. Rowe's research is supported by the Canadian Institutes of Health Research (CIHR) by a Scientific Director's Grant (SOP 168483) through the Government of Canada (Ottawa, ON). These funding organizations had no involvement in any aspect of the conduct, analysis, and article preparation of this study; the funders take no responsibility for the conduct or results of this review.

Author Disclosure Statement

None of the authors have any conflicts of interests to declare.

Supplementary Material

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Supplementary Material

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