Care Redesign

Patient-Centered Care at the End of Life in the ED

Case Study · August 29, 2019

In the last few decades, innovation in cancer care and the widespread availability of new therapies has resulted in increased hospitalization and resource utilization and later hospice referrals, adding significant cost to the health care system without improving quality. Although palliative care may improve outcomes, referral to these services is usually late, decreasing the advantages of this holistic approach to the physical, emotional, social, and spiritual needs of the patient and family at the end of life (EOL). The MD Anderson Cancer Center has initiated interventions in the emergency department (ED) that improve EOL for these patients while saving money.

Key Takeaways

  1. In patients with advanced cancer, symptoms of delirium or altered mental status, poor performance, and/or dyspnea have been associated with a poor prognosis and can be used as a screening tool for evaluating patients’ appropriateness for end-of-life care.

  2. In the ED, a comprehensive palliative care program can significantly improve the experiences of patients and their families by providing care in accordance with patients’ wishes.

  3. Measure and monitor EOL care using established metrics. Doing so will improve the efficiencies of the palliative care program.

The Challenge

The need for improvement in end-of-life care has been well documented. The Institute of Medicine’s 2014 report “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life” maintains that patients at the end of life need care that is consistent with their values, goals, and preferences. The report concluded that the American health care system is fragmented and identified a gap between services provided at the end of life and the care patients want to receive. Additionally, the National Quality Forum identified metrics of poor EOL care for terminally ill cancer patients, such as the proportion who:

  • died from cancer and were not admitted to hospice,
  • died from cancer after receiving chemotherapy in the last 14 days of life, or
  • were admitted to the intensive care unit (ICU) in the last 20 days of life.

Moreover, the cost of cancer care is rising and more than 25% of all Medicare expenditures occur in the last year of life, and more than 40% of those costs are incurred in the last 2 months of life, due mainly to treatment in the ICU.

Palliative care improves the quality of life of patients at the end of life and supports their family members. It has been shown to improve all quality metrics identified by the National Quality Forum and reduce the cost of cancer care, in particular.

Referral to palliative care typically occurs several days after a hospital admission through the ED. At MD Anderson Cancer Center, we found it difficult to consistently identify who was dying, so providing timely palliative care referrals was challenging. Additionally, a large percentage of those patients presented to the ED without having done any advance care planning (ACP), including discussion of a “do not resuscitate” (DNR) order.

Another challenge was that the screening of these patients had fallen on the shoulders of the busy ED physicians, who had to incorporate into their workflow the use of prognostic scores, such as the Palliative Care Prognostic Index, to help identify patients who are nearing the end of life. Also, they had to initiate difficult and sometimes time-consuming conversations in a fast-paced and busy environment where the culture dictates that their primary responsibility is to save lives. As a result, referral rates to palliative care services and hospice were low, and interventions were sometimes initiated that were inappropriate in this population, such as endotracheal intubation, mechanical ventilation, and referral to the ICU. To address this challenge, a strategic Palliative Acute Care Team and program was developed and integrated into the emergency department.

A challenge for the ED physicians is to communicate to the patients that they are at the end of life. The majority have not received training in the palliative management of patients at the end of life, nor how to conduct this conversation. Although palliative care specialists in the institution have been available to serve patients in the ED, at the time of an emergency, the responsibility of initiating care falls to the ED provider. And with the time pressures inherent to the environment, ED physicians default to customary aggressive, heroic ED measures. An endotracheal intubation procedure typically takes just a few minutes while an EOL conversation with a patient and family can require 20 to 30 minutes or more Even when attendings have had EOL conversations, patients’ hope for a cure sometimes trumps their acceptance of palliative treatment.

The Goal

Our goal was twofold: to encourage end-of-life conversations with terminally ill patients and those with advanced cancer who are admitted to the ED, and to initiate palliative care interventions, addressing patients’ goals of care and symptoms of distress while in the ED. The emergency department is an important place for these interventions and discussions to take place because decisions made in the ED determine the patient’s intensity of medical treatment and overall trajectory.

The Execution

In 2014, small quality improvement initiatives in end-of-life care for ED patients were conducted. The team leaders of those projects obtained buy-in from leaders in the emergency medicine department and the division of internal medicine. In 2016, the quality improvement team leaders applied for and received an internal grant to pursue a more comprehensive EOL quality improvement initiative, which this case study describes. Grant money was utilized for the quality improvement project, specifically for educational initiatives. The team members were authorized by their managers to dedicate a fraction of their time to the EOL project.

A multidisciplinary team of stakeholders, including hospital and ED administrators, leaders of the ED and supportive care departments, IT specialists, quality engineers, a case manager, social workers, community hospice staff, physicians, nurses, palliative care specialists, and cancer patients and their families, was formed and met regularly. The diversity of stakeholders enabled a shared understanding of the context of EOL from multiple perspectives and contributed to the success of the project, maximizing buy-in and minimizing resistance. The team worked concurrently on different protocols.

Understanding Who Is Dying in the ED

We first needed to understand who was arriving to the ED terminally ill. We reviewed administrative hospital data and identified that for cancer patients who showed up at the ED with one of the following symptoms, their survival rate would be less than 5 months:

  • delirium or altered mental status
  • poor performance, defined as spending more than 50% of the time in bed
  • dyspnea

If patients arrived with two or more of these, their survival rate was shown to be less than 2 months. Our tool is closely related to the Palliative Care Prognostic Index, which assesses patients’ performance status, oral intake, edema, dyspnea at rest, and delirium. We also folded the following question into the assessment: “Would I be surprised if this patient died in the next 2 months?”

Building the Palliative Acute Care Team

An interdisciplinary Palliative Acute Care Team (PACT), headed by a palliative care physician with expertise in EOL care in the ED, was formed and met monthly to address end-of-life care in the ED. The team comprised eight ED physicians, nurses, a social worker, a case manager, a chaplain, and volunteers. The team also carried out the intervention.

All ED physicians were taught how to have meaningful EOL conversations with cancer patients and their caregivers and were also provided with two tools to help identify patients with poor prognoses. Eight of the 18 ED physicians attended a 2-day educational program in palliative and EOL care for emergency medicine sponsored by the National Cancer Institute. Those eight physicians would rotate work on the PACT and were encouraged to provide the right care to the right patient at the right time, including discussing ACP and DNR orders in consultation with the hospital palliative care physician or the rest of the ED PACT.

The Intervention

The first step is to identify at triage cancer patients who might benefit from the PACT’s intervention. The triage nurse screens for the three symptoms associated with poor prognoses: dyspnea, altered mental status, and poor performance status. (The checklist was incorporated into the electronic medical record by the informatics team.) If the patient is positive in triage and a potential candidate for PACT intervention, the triage nurse writes “PCT,” which stands for Palliative Care Team, in the electronic medical record comment section, which signals that the patient is positive in triage and a potential candidate for the PACT intervention.

The PACT physician on duty (one of the eight rotating specially trained physicians) verifies that the patient has advanced cancer and then activates the rest of the team. The treating ED physician can also activate the PACT directly through a paging system.

End of Life EOL Palliative Care in the ED for Patients with Advanced Cancer - Process Map - MD Anderson Cancer Center

  Click To Enlarge.

The intervention involves addressing issues related to physical and psychological distress faced by the patient and family, and consulting with the patient’s primary oncologist. The latter is vital, as patients want to know that EOL decisions are being coordinated with their oncologist. Social workers assess the patient’s psychosocial needs and provide information about advance care planning, documenting their discussions in the electronic medical record’s ACP folder. A case manager is involved in determining the patient’s appropriateness for hospice. The chaplain can provide one-to-one spiritual counseling if requested.

While in the ED, patients who do not suffer from delirium or have altered mental status are given the Edmonton Symptom Assessment Scale (ESAS) by the PACT. The assessment tracks symptoms of distress while awaiting admission. The ESAS is administered to hospitalized patients again 2 to 3 days after the ED visit to help determine whether the early EOL intervention has benefited the patient.

Metrics

The program tracks the following:

Edmonton Symptom Assessment Scale (ESAS) by the PACT

  Click To Enlarge.

Tracking the Results

A pilot project was conducted between July and September 2017. Sixty-two patients with advanced cancer who presented with at least one of the above-mentioned poor prognosis symptoms were selected. Half of them received the PACT intervention and were then compared to the other half who presented with similar symptoms and received the usual care, including consultation by the inpatient palliative care service at the discretion of the ED or the inpatient oncology physician.

The results of the pilot were as follows:

  • DNR orders: 64.5% of the patients who received care by the PACT in the ED had DNR orders vs. 9.7% of the control group.
  • Hospice: 58% of patients in the PACT cohort had a hospice disposition vs. 35% in the control group.
  • ICU admissions: 3.2% of patients in the PACT cohort were admitted to the ICU vs. 22.6% of the control group.
  • Hospital deaths: 29% of patients in the PACT cohort died in the hospital vs. 52% in the control group.
  • Hospital stays: 1.7 days on average for the PACT cohort vs. 4.2 days for the control group.
  • Hospital palliative care consultation: This occurred 2 days earlier in the PACT cohort than in the control group.

One of the most significant outcomes of the pilot was the mitigation of symptoms of distress such as pain, drowsiness, and depression, and the increase in general well-being in all 14 patients who completed the symptom assessment (ESAS) during their ED stay and then 2 to 3 days later.

Impact

For patients at the end of life, care delivered in the emergency department can be extremely fragmented. Although the ED’s primary goal is to save lives, providing good EOL care will result in better quality and less costly cancer care. Our pilot patient-centered model of care for patients with advanced cancer at the EOL has been critical to understanding how to successfully integrate palliative care into the ED setting and to evaluating outcomes such as resource utilization, quality of life, hospital occupancy and diversion, and patient and family satisfaction.

Next Steps

This model of EOL ED care is being evaluated with an eye toward taking it beyond a pilot, as it is an institutional priority to address EOL care in the whole enterprise. The MD Anderson Cancer Center ED has also joined other academic EDs in researching EOL issues in the ED.

Where to Start

To get started with a similar project, we recommend the following:

  1. Understand the barriers to appropriate emergency department care for patients at the end of life.
  2. Involve key institutional, ED, and community stakeholders, including patients and family representatives, from the very beginning. It is vital to engage leadership in the project, including champions who feel strongly about palliative care in an emergency department setting.
  3. ED residency programs should incorporate more palliative care teaching in their curricula. Hospital-based palliative care services should consider allocating more of their limited resources to educating ED physicians on the principles of palliative care.
  4. Organize an interdisciplinary ED palliative care team and incorporate it into the institution’s business model.
  5. Select EOL metrics, collect data, and measure patient, family, and health care provider satisfaction with the process to monitor program impact.

 

We want to thank Sorayah Bourenane, MSN, RN, CNL, Nycolyn Hoffman, BSN, RN, medical student Luke Buffardi, senior statistician John Terrell, and Han Bui, LMSW, for contributing to this case study.

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