Emergency Palliative Care: Hospice Patients in the Emergency Department

Case Presentation and Palliative Care Consultation

Mr. “Chuck Stephenson” is a 46-year-old male with a past medical history significant for stage IV hepatocellular carcinoma with known metastases to bone, adrenal glands, and pleura. He presented to the emergency department (ED) from home with his brother, Jack, due to abdominal distention and pain.

Two weeks prior, Chuck had been admitted for abdominal pain and distention. Palliative care (PC) was consulted during this admission, and after undergoing serial therapeutic paracentesis, his symptoms improved. After multiple conversations, it became clear that cancer-directed treatment options were limited, and he desired to focus on comfort and remaining at home with his brother. Since it was unclear at what point repeat paracentesis would need to be performed, it was not scheduled. Since his goals aligned with comfort-focused care at home, he was discharged with the support of hospice services.

On the current ED visit, Chuck complained of worsening abdominal distention, uncontrolled pain, and failure to thrive despite an increase in his opioid medication dose by his hospice team. His sister had just arrived from California and was shocked to see how much Chuck had declined. She worried that the hospice team was not able to “do enough for him” and his abdominal distention. The hospice team had attempted to coordinate outpatient paracentesis, though they were encountering a several week delay in scheduling an appointment. The decision was jointly made to present to the ED to expedite care, receive more aggressive symptom management, and receive potential repeat paracentesis. Given Chuck's guarded prognosis and the uncertainty of how to best manage a hospice patient in the ED, the PC team was consulted.

PC Assessment and Initial Intervention

The PC clinician and social worker met with Chuck and his family in the ED to aid in symptom management, as well as to clarify the reason for the ED visit and his goals of care. Initially, Chuck was in significant pain, and the PC consultant recommended to the ED team rapid administration of multimodal pain therapy with acetaminophen (kept under 2000 mg/day) and IV opioids at higher than usual ED dosage due to Chuck's baseline opioid use.

After his pain was better controlled, Chuck was able to explain that he overall was pleased with hospice care, and that he presented seeking a repeat paracentesis. His sister shared that even with Chuck getting significantly weaker and not eating well, the hospice team “couldn't do anything quickly enough but increase the dose of his pain medications.” The PC team also explored and validated the sister's frustrations, uncovering that she had some misunderstandings of hospice philosophy, as well as guilt about not being more present for Chuck in recent weeks.

A joint conversation was held with Chuck and his siblings to revisit Chuck's values about his health care, allowing his siblings to hear his perspective directly. Chuck's understanding of his prognosis was accurate, and his goal remained staying at home, enjoying time with his family, and listening to his favorite musical artist, Kygo. He did not want to return to the hospital or clinic for ongoing paracentesis and wanted this managed at home. Once hearing Chuck's preferences directly, his sister became more amenable to a plan that would allow him to return home and comfortably drain his ascites there without having to return to the hospital.

To optimize communication with Chuck and his family, the PC team reached out to the hospice team directly. They confirmed that they were aware of the ED visit, and the struggles they had encountered in expediting outpatient procedural intervention. Since his presentation was related to his hospice diagnosis, they would accept financial responsibility for the procedure and would maintain him enrolled in hospice services. The hospice team also confirmed they were able to manage indwelling abdominal drains including Pleur-X catheters. The ED team had initially planned a full workup including computed tomography (CT) scan, though the PC team clarified with Chuck that he didn't feel this was necessary unless it was needed for a procedure, and the scan was deferred.

Case Outcome and Follow-Up

Since Chuck wanted his ascites managed more definitely at home and desired to avoid future admissions or visits for paracentesis, the decision was made to pursue an abdominal tunneled catheter over serial therapeutic paracentesis. The PC team coordinated with the ED team to arrange for placement of a tunneled catheter with the Interventional Radiology (IR) team. Once it was clarified that the drain could be placed the next morning, the PC team returned to discuss the plan with Chuck and his family, who all agreed. His sister expressed her appreciation that this would address her concern of managing his pain via serial removal of ascites rather than only by giving increased doses of pain medications.

While the initial plan had been a full admission, Chuck was placed in ED observation status for drain placement the next day. The PC team assisted with management of acute-on-chronic abdominal pain, constipation, nausea, and pruritus while awaiting the procedure. The morning of the procedure, he was re-evaluated by PC and noted to be much more comfortable and was anxiously awaiting the drain placement.

While Chuck had noted his preference for being DNR/DNI in the past, the IR team requested he revert to full code for the procedure. This was subsequently discussed with Chuck and family who agreed. IR was able to successfully place the abdominal tunneled catheter without complication. His code status, however, was inadvertently left as “full code” after the procedure. At the time of discharge, the PC team noticed this error. They clarified with the patient and the ED team that he wanted to be switched back to DNR/DNI, and this was updated in his chart. He was subsequently discharged back to home with his siblings for ongoing hospice care.

Discussion

This case highlights several important issues related to the role of a PC clinician in helping to care for hospice patients in the ED:

ED visits to expedite hospital-based or procedural intervention: Patients on hospice often present to the ED for additional workup, treatment, a procedure, or at the behest of a family member. In our case, the patient was continued on hospice care for this admission since it was related to his hospice diagnosis, which is a hospice best practice. At the same time, hospice per diem rates can make it financially challenging for hospice companies to include continuity for acute facility services. Practices such as revoking and re-enrolling in hospice services for a procedure related to a terminal diagnosis should be discouraged as they pose “red flags” for fiscal intermediaries such as the Centers for Medicare and Medicaid Services (CMS). PC can play an important role in these situations, helping to communicate with patients, their families, and hospice/medical teams to focus and streamline care. In this case, the PC team was able to help the patient avoid an unwanted admission and CT scan. He was able to receive a desired procedure and to expeditiously return home with continued hospice support.

The care of hospice patients in the ED is complex and challenges typical ED paradigms of care.^5,6 PC can play an important role in these cases, helping to manage symptoms aggressively and work with patients and families to determine treatment plans and dispositions that align with their goals and values. By communicating with the hospice team, gaps in care can be closed, and appropriate follow-up plans can be created to ensure that the best possible patient care is provided.

Emergency Palliative Care Working Group

Emily L. Aaronson, MD, Ryan Baldeo, PA, Jason K. Bowman, MD, Paul DeSandre, MD, Kirsten G. Engel, MD, Brian Gacioch, MD, Corita Grudzen, MD, Vicki Jackson, MD, MPH, Maura Kennedy, MD, Sangeeta Lamba, MD, Shan W, Liu, MD, SD, Carter Neugarten, MD, Kei Ouchi, MD, MPH, Tammie E. Quest, MD, Janet S. Rico, CNP, PhD, MBA, Christine S. Ritchie, MD, MPH, David Wang, MD, and Alex Zirulnik, MD.

Funding Information