Timing of End-of-Life Decision-Making in Patients Awaiting Transplantation

Research Article

Austin Transplant Sci. 2016; 1(1): 1001.

Timing of End-of-Life Decision-Making in Patients Awaiting Transplantations

Chen ME¹, Harada MY¹, Voidonikolas G¹, Garnett G¹, Li T¹, Patel B¹, Yim D¹, Chen E¹, Ley EJ¹, Nissen NN¹, Shinde A² and Annamalai A¹*

¹Department of Surgery, Cedars-Sinai Medical Center, USA

²Department of Gastrointestinal Oncology and Supportive Care Medicine, Cedars-Sinai Medical Center, USA

*Corresponding author: Alagappan Annamalai, Comprehensive Transplant Center, Cedars-Sinai Medical Center, 8900 Beverly Blvd, 2nd fl. Suite 262, Los Angeles, CA 90048, USA

Received: July 19, 2016; Accepted: August 26, 2016; Published: August 30, 2016


Introduction: Patients with end stage liver disease awaiting transplantation often develop acute complications during the wait-list period. They are in a unique situation in which organ transplantation could completely reverse their disease with excellent outcomes, making it difficult to determine at which point end-of-life decision-making should occur. The purpose of this study was to characterize the current use and timing of supportive care team involvement.

Methods: We conducted a retrospective cohort study of all cirrhotic patients admitted to the ICU between January 1, 2013 and December 31, 2014. Supportive care data and outcomes were recorded by reviewing the date and patient medical status at the time of consultation.

Results: Of the 170 patients admitted to the ICU with cirrhosis, 120 (71%) were either discharged or underwent a transplant and 50 (29%) died in the ICU. Of all patients, 94 (55%) were listed for transplant. Of the 50 patients who died in the ICU, 17 (34%) received a supportive care consult during their ICU stay. Median (IQR) time between ICU admission and supportive care consult was 14 (10-27) days. Median (IQR) time between supportive care consult and death was 1 (0-1) day.

Conclusion: Only 10% of patients and families received supportive care assistance. Of the patients who died, only a third engaged in end-of-life discussions with a dedicated team. While transplantation is the optimal outcome in this population, critically ill patients awaiting transplantation would benefit from goals of care discussions earlier in their treatment.

Keywords: Liver transplantation; Decision-making; Supportive care


Over the past two decades there has been an increased focus on improving the quality of end-of-life care [1]. As life expectancy has increased, so has the development of chronic and often debilitating disease, leaving patients and their families with both physical and nonphysical burdens, and leaving providers with a new set of challenges in caring for patients with advanced illness. In 2001, the American College of Surgeons formed the Palliative Care Task Force, whose principles not only include access to hospice care around time of death, but also aim to alleviate pain and suffering, and optimize quality of life in earlier stages of disease [2]. This is representative of a general shift in the field of palliative care medicine to engage with patients and their family’s fartherupstreamin the trajectory of chronic illness, in order to address issues related to quality of life and goals of care. Furthermore, recent studies, largely within the oncologic and critical care populations, have found that early, dedicated and transparent communication among providers, patients, and their families results in decreased Intensive Care Unit (ICU) Length of Stay (LOS) [3], decreased levels of anxiety and depression among family members [4], and improved provider-level assessments of death and dying [5].

Patients with End Stage Liver Disease (ESLD) awaiting transplantation represent a unique group among those with advanced illness. Given the shortage of available organs, long wait list times mean progression of chronic disease and high risk for acute complications that may ultimately lead to death before a donor organ becomes available. Currently there are over 15,000 patients on the wait list for liver transplantation [6]. In 2014, nearly 12,000 were delisted for death or deterioration [6]. Nonetheless, those who do make it to transplantation have the potential to reverse their disease with excellent outcomes, with 1-year survival rates approaching 90%, and 5-year survival rates greater than 70% [6]. The inherent uncertainty of living with a progressive disease with a high symptom burden, but also with the possibility of cure can be distressing to patients and families dealing with advanced liver disease [7-9]. Furthermore, with the stark contrast in outcomes for cirrhotic patients, it is often difficult for providers to determine the appropriate time when endof- life decision-making should occur.

The purpose of this study is to evaluate the utilization and timing of palliative care services amongst critically ill patients with ESLD admitted to the ICU in a single institution.


This study took place at a single tertiary care center that typically performs between 50 and 60 liver transplants per year. We have a 24 bed ICU in which patients are managed both by their primary team as well as a dedicated critical care team, though the decision to involve supportive care services is ultimately at the discretion of the primary. We conducted a retrospective cohort study of critically ill patients with end stage liver disease between January 1, 2013 and December 31, 2014. We included all adults (>18 years of age) with a diagnosis of cirrhosis who were admitted to the ICU. Patients were included whether or not they were actively listed for liver transplant at the time of ICU admission (patients undergoing transplant evaluation and those who were de-listed comprise the latter group). Patients were excluded if they were under the age of 18. Of note, we did not include patients prior to January 1, 2013 because medical records for that time period do not clearly delineate whether or not a patient was seen by a dedicated Palliative Care team (as opposed to engaging in end of life discussions with members of primary or consulting teams).

Medical records were reviewed for the disposition of the study population—looking specifically at whether patients went on to transplantation, whether they were discharged from the ICU without transplant, or whether they died while in the ICU. We also evaluated whether or not each patient received a palliative care consult, time in between ICU admission and consult, and time between consult and death. Data was analyzed using IBM SPSS version 22. Non-parametric data were reported as medians with Interquartile Ranges (IQR) and compared using rank sum or χ2 tests where appropriate. ANOVA was used to compare variables with more than two events.


Demographic characteristics of the 170 patients included in this study are shown in (Table 1). Median (IQR) age was 57 (52-67). Median (IQR) MELD score at time of ICU admission was 28 (17-37). Only 18 (11%) patients received palliative care consults, and this was initiated at a median (IQR) of 14 (10-27) days after ICU admission. We compared the cohort of patients who did not receive palliative care consults against those who did (Table 2). Patients in the latter group were less likely to be men (65% vs. 31%, p = 0.01), tended to have higher MELD scores at time of ICU admission (27 [26-37] vs. 36 [25-42], p = 0.01), and had a higher ICU mortality rate (25% vs. 67%, p < 0.01). Fifty patients (30%) in our study died in the ICU. These patients were more likely to have used palliative care services (of interest, none of the patients who went on to liver transplant were seen by palliative care) and had a higher median (IQR) ICU LOS than both the patients who were transplanted and those who were discharged from the ICU without undergoing LT (12 [6-17] vs. 7 [3- 14] vs. 4 [3-8] days, respectively, p < 0.01) (Table 3).