Palliative Care and End-Stage Liver Disease: A Cohort Analysis of Palliative Care Use and Factors Associated with Referral

Introduction

The prevalence and mortality of chronic liver disease have risen significantly worldwide in recent decades. In Portugal, liver disease ranks as the 8th leading cause of death, with the country having the highest mortality rate from hepatocarcinoma in Europe. Chronic liver disease typically progresses from a compensated phase to decompensated liver cirrhosis, characterized by complications such as ascites, hepatic encephalopathy, or gastrointestinal bleeding. End-stage liver disease (ESLD) is defined by advanced liver fibrosis and one or more liver-related complications. The survival rate for patients with ESLD is approximately two years, and the presence of hepatocarcinoma can worsen the prognosis. Liver transplantation is the only curative treatment for ESLD, but many patients are ineligible, and organ scarcity limits access to this option.

Section 1: Palliative Care in ESLD

Despite the poor prognosis and high symptom burden associated with ESLD, the integration of palliative care remains limited. Studies indicate that palliative care is often introduced late, typically after patients are excluded from liver transplantation lists or in the final days of life. Palliative care teams play a crucial role in symptom management and facilitating discussions about care plans and treatment goals, which are often neglected in ESLD patients. They also provide essential support to caregivers who face significant physical and psychological burdens.

Several barriers hinder the early integration of palliative care in ESLD, including misconceptions about palliative care being synonymous with end-of-life care, a focus on curative treatments by physicians, and a shortage of palliative care specialists. However, growing research and recommendations from scientific societies highlight the benefits of palliative care in improving symptom management and quality of life for ESLD patients.

Section 2: Study Design and Methods

This study aimed to assess the factors and trends associated with palliative care use in ESLD patients who died between 2017 and 2019. A retrospective cohort study was conducted across three Portuguese hospitals, representing different types of healthcare facilities. Patients were identified through electronic medical records using ICD-9-CM codes for cirrhosis, chronic liver disease, and hepatic decompensation indicators. Exclusion criteria included patients under 18, those who died from acute hepatic failure or liver transplant, and those who died from causes unrelated to ESLD.

Section 3: Results

A total of 201 patients were analyzed, with a yearly increase in palliative care consultations from 26.7% in 2017 to 38.3% in 2019. Patients who received palliative care were generally older, had a lower Karnofsky functionality scale, and higher rates of hepatic encephalopathy and hepatocarcinoma. No significant differences were found in MELD-Na or Child-Pugh scores between those who received palliative care and those who did not. Notably, none of the patients who died in the intensive care unit received palliative care, and half of the palliative care consultations occurred just 6.5 days before death.

Subsection: Factors Associated with Palliative Care Referral

Multivariate analysis revealed that the presence of hepatocarcinoma and a lower Karnofsky index were significant predictors of palliative care referral. The absence of hepatocarcinoma reduced the likelihood of referral by 71.5%, and each unit increase in the Karnofsky index decreased the probability of referral by 4.1%. Other factors such as age, sex, Charlson index, disease duration, and MELD-Na scores did not significantly impact the likelihood of referral.

Patients with hepatocarcinoma had a longer median time between palliative care referral and death compared to those without hepatocarcinoma. This highlights the need for earlier palliative care intervention to maximize its benefits.

Section 4: Discussion and Conclusions

This study demonstrates an increasing trend in palliative care referrals for ESLD patients, particularly those with hepatocarcinoma or lower functional status. However, referrals often occur late, limiting the potential benefits of palliative care. Future research should focus on strategies to integrate palliative care earlier in the disease trajectory to improve patient outcomes and quality of life.

In conclusion, while palliative care use in ESLD is increasing, it remains suboptimal and often delayed. Efforts should be made to promote earlier and more consistent integration of palliative care into the management of ESLD to enhance patient care and support for caregivers.

References

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