Some ED Patients Undergo Unwanted End-of-Life Care
By Stacey Kusterbeck
Nearly 300,000 people die in the ED each year (accounting for 11.3% of total deaths in the United States). About one-third of all decedents had visited an ED within the month before their death, according to a group of researchers who analyzed a national database covering more than 104 million ED patients.1 “This suggests there is an unmet need for access to excellent end-of-life and palliative care in EDs,” says Jonathan Elmer, MD, MS, the study’s lead author and associate professor of emergency medicine, critical care medicine, and neurology at the University of Pittsburgh.
Patients who died in the ED were, on average, older and presented with more comorbidities vs. the general ED patient population. Of patients older than age 80 years, nearly one in 12 died within a month of their ED visit.
The need for palliative care in the ED is growing, partly because people are living longer with increasingly complex medical conditions. “Not all EDs have access to palliative care consultants,” Elmer notes.
Even if the ED does, not all patients receive the palliative care they need. In clear-cut cases in which a patient presents to the ED with a terminal condition and is actively dying, staff might contact palliative care or hospice.
“Where there may be greater unmet need is with the much higher volume of patients for whom the ED visit may represent a sentinel event — those who are older and have multiple medical comorbidities,” Elmer explains.
Although the patient survives the acute encounter that led to the ED visit, that person likely will need palliative care — and soon. “We know that many people would prefer not to die in the hospital or have aggressive medical treatments or invasive procedures that hold no reasonable prospect to improve the quality of life,” Elmer says.
Despite this, patients commonly receive an enormous amount of medical care at the end of life. The challenge for emergency clinicians is to provide care that is consistent with the patient’s expressed values and preferences. Careful discussions to delineate patients’ wishes usually are not possible in the ED. People often present to the ED without well-defined goals of care.
“Sometimes, life-sustaining treatments are initiated in the ED in the face of uncertainty. We are required to err on the side of life,” Elmer offers.
Beyond the cost and resources required, this can force families (or other surrogate decision-makers) to make difficult decisions about withdrawal or continuation of life-sustaining therapies. Those heart-wrenching decisions could have been averted if the patient’s wishes had been clear in the first place, allowing ED providers to follow those.
Aggressive care can be appropriate. “But end-of-life care that we provide now is extraordinarily resource-intensive, and not always wanted,” Elmer notes.
Excellent palliative care is cheaper than critical care, and some patients prefer it. Elmer says the question for EDs is: How can we use fewer resources for end-of-life care by targeting those resources appropriately? “Palliative care providers are also spread thin,” Elmer observes.
Palliative care providers could not keep up with all the consults generated from the ED if high-risk patients (e.g., the elderly or those with multiple comorbidities) routinely triggered a consult. “When we discharge patients with instructions to follow up with a provider, it often falls through the cracks,” Elmer adds.
Discharge instructions to document goals of care are not always followed. Ideally, ED providers take the extra step of connecting patients with someone who can help before discharge. If patients are admitted, EDs can designate a trained member of the medical team — a specially trained nurse, the admitting physician, a social worker, or a palliative care provider. “It’s about their skill set, not their degree,” Elmer says.
In the ED, the patient’s clinical course and prognosis often are unclear. “That certainty is sometimes sufficient to prevent major treatment decisions from being made,” Elmer laments. “We aren’t trained to prognosticate.”
Despite that uncertainty, it remains possible to provide value-concordant care in the ED. Some patients are certain they do not want to be on a ventilator, even if there is a 10% or 20% chance of surviving the acute episode.
“We need to identify those patients, and initiate decisions based on goals of care, not just by some default reflexive pathway. This could help improve patients’ experiences and outcomes broadly, by targeting the right treatments to the right patients,” Elmer offers.
To improve ED patients’ access, a palliative care provider recently was stationed in the ED at Scripps Memorial Hospital La Jolla (CA).2 This change resulted in 10 times as many ED palliative care consultations requested. The ED became the hospital’s primary course of palliative care consults, even more than inpatient units.
“My intent was to address how emergency and palliative clinicians, whom both encounter seriously ill patients in crucial moments, can partner,” says David Wang, MD, the study’s lead author and a palliative medicine physician with Scripps Health.
The consults resulted in important changes to ED patients’ treatment plans. Almost half of ED patients who received a palliative care consult changed their code status, 11% avoided hospitalization, and 17% were referred to hospice care.
Palliative care consults “improve the patient experience in their longitudinal journey with serious illness, both during this ED visit and subsequently, as they receive the right care, in the right place, at the right time,” Wang says.
1. Elmer J, Mikati N, Arnold RM, et al. Death and end-of-life care in emergency departments in the US. JAMA Netw Open 2022;5:e2240399.
2. Wang DH, Heidt R. Emergency department embedded palliative care service creates value for health systems. J Palliat Med 2022; Nov 11. doi: 10.1089/jpm.2022.0245. [Online ahead of print].
Despite uncertainty, it is possible to provide value-concordant care in the ED. Identify those patients, and initiate decisions based on goals of care, not just by a default reflexive pathway. This could help improve patients’ experiences and outcomes broadly, by targeting the right treatments to the right patients.
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