Title: Health Care Utilization and End-of-Life Care Outcomes for Patients with Decompensated Cirrhosis Based on Transplant Candidacy

Background:

ESLD is the 5th leading cause of death in the U.S. in people ages 25-64 and 4th leading cause in ages 45-54. While patients may live with cirrhosis for many years, the development of decompensated cirrhosis is a turning point with median survival 1.8 years. Median survival is dramatically less, however, for people > 65 years. For these older individuals, median survival is predicted by clinical factors: hepatic encephalopathy= 1 year; ascites= 1 year; ascites + paracentesis= 4.5 months. Patients with ESLD are high utilizers of health care at EOL and are rarely referred to PC or hospice. This study looked at how transplant candidacy affected health care utilization and EOL care in a group of patients who died due to decompensated cirrhosis that developed in an ambulatory setting.                        

Design and Participants: The study was a retrospective analysis of patients evaluated for liver transplant from a single healthcare system of 9 acute care hospitals, including one tertiary hospital with a liver transplant program. Included patients (n=230) had decompensated cirrhosis that developed in the ambulatory setting, underwent evaluation between 2010 and 2017, and had died by 2018. Chart review was performed to collect data related to health care utilization in the last year of life and PC utilization.

Results:  133 (58%) patients were on the liver transplant list at time of death; 97 (42%) were not. In the last year of life, patients had a median of 3 hospitalizations and 1 ICU admission, without difference between listed and unlisted patients. Both groups spent a similar number of days (28 vs 33) hospitalized in the last year of their life. Median LOS during last hospitalization before dying was 13 days in both groups. 70% of patients received mechanical ventilation, dialysis, or CPR in the final hospitalization. Those who were transplant-listed were more likely to have been ICU admitted in final hospitalization (80 vs 66%). 69% of deaths occurred in ICU and 83% in hospital with the most common causes infection and GI bleeding. In-hospital mortality was not significantly different between listed and unlisted patients. Those patients who died after hospital discharge lived a median of 8 days. During the final hospitalization, 92% of patients were admitted to the hospital as full code with no difference between listed and unlisted patients. A transition to DNR or comfort care occurred in 94%, the timing of which was within the final 72 hours of life for 80%. Only 78 patients (34%) were referred to specialty PC. Transplant listed patients were significantly less likely to receive PC referral. 57 patients were referred to hospice where they had a median 6 day LOS. 23/57 patients (40%) referred to hospice died at home. Listed status was not associated with referral to hospice.

Commentary:  This study identifies a patient population with high symptom burden, high risk of death, and high health care utilization at EOL which may benefit from earlier PC intervention. Both patients who were and were not candidates for liver transplant received highly intensive care near end of life and entered their terminal hospitalization as a full code. The study points out the need for improved ACP and PC intervention to improve EOL care for patients with decompensated cirrhosis, especially those who are not candidates for transplantation. Patients were recruited from a single health care system with one liver transplant program, which may limit generalizability of the findings. Areas for further research include 1) identifying barriers to earlier involvement of PC in the care of patients with decompensated cirrhosis; 2) investigating best setting for hospice care of those dying from decompensated cirrhosis; and 3) balancing preparing for EOL whilst continuing hope for curative transplant in those who are eligible.

Bottom Line:  Early PC intervention for patients with decompensated cirrhosis has potential to greatly impact QOL, diminish nonbeneficial interventions, and improve care in the final year of life. Developing partnerships with transplant hepatologists and surgeons is important to PC involvement in the care of these patients. Fortunately, in 2022, the American Association for the Study of Liver Diseases issued a "practice guidance “Links to an external site.¹ for PC in decompensated cirrhosis which supports early involvement of both primary and specialty PC in the care of these patients.

References: 1. Rogal SS, Hansen L, Patel A, Ufere NN, Verma M, Woodrell, CD, Kanwal, F. AASLD Practice Guidance: Palliative care and symptom‐based management in decompensated cirrhosis. Hepatology 2022. 76(3): 819-853. DOI: 10.1002/hep.32378

AASLD Practice Guidance Palliative care and symptom‐based management in decompensated cirrhosisLinks to an external site.

Source: Ufere, NN, Halford, JL, Caldwell, J, Jang, MY, Bhatt, S, Donlan, J, Ho, J, Jackson, V, Chung, RT and El-Jawahri, A. Health care utilization and end-of-life care outcomes for patients with decompensated cirrhosis based on transplant candidacy. Journal of pain and symptom management 2020. 59(3):590-598. doi.org/10.1016%2Fj.jpainsymman.2019.10.016