Serene image of stylized liver with blooming flowers representing palliative care.

Navigating End-Stage Liver Disease: Why Palliative Care Matters

Theo Raines monogram
Theo Raines in Health & Wellness October 2026 • 4 min read.

"Understanding the Underutilization of Palliative Care in Decompensated Liver Disease and Its Impact on Patient Outcomes"


Liver cirrhosis, a progressive condition leading to decompensation, often results in repeated hospital admissions for patients ineligible for transplantation. Managing these patients requires a comprehensive approach, including palliative care services, yet these services are often underutilized.

A recent retrospective study examined the care of adult patients with known cirrhosis who were admitted with decompensated cirrhosis to Queen Elizabeth II Health Sciences Centre in Halifax, NS, between May 2015 and May 2017. The study aimed to characterize this patient population, detailing their healthcare utilization, with a particular focus on palliative care services.

The research meticulously collected data on various aspects, including the length of hospital stay, the underlying cause of liver disease, complications, co-morbidities, goals of care discussions, transplant candidacy, and MELD-Na scores. It also looked at consultations, procedures, diagnostic imaging, palliative care usage, ICU admissions, and the need for intubation or dialysis.

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Prevalence and Prognosis

The CDC reports that 1.8% of U.S. adults age 18 and older had diagnosed liver disease, drawing on 2018 National Health Interview Survey data. A 2024 cohort paper describes survival in end-stage liver disease as approximately two years and says palliative care integration remains limited despite poor prognosis and high symptom burden. These figures underscore both the population impact of liver disease and the need to address support for people with advanced disease.

Concurrent Support and Ongoing Barriers

Palliative services can include setting achievable, patient-centered goals and managing symptoms alongside curative or disease-modifying treatment—the simultaneous care model. Yet patients with liver disease have symptom burdens comparable to those with other life-limiting conditions, while uncertain disease trajectories and perceived complexity can limit provision of high-quality palliative care. The sources describe both a concurrent-care approach and barriers to delivering it consistently.

Hospice Roots and Origins

Palliative care has roots in the UK hospice movement, which the Harvard Medical School Center for Palliative Care says began in the early 1960s in response to the end-of-life needs of cancer patients often abandoned when treatment options failed. A UPMC history document instead identifies 1948 as the year Dame Cicely Saunders founded the first formal hospice for people with terminal illnesses. These accounts describe different milestones in hospice history rather than establishing a single date for its beginnings.

Key Findings: Understanding the Gaps in End-of-Life Care

Serene image of stylized liver with blooming flowers representing palliative care.

The study, which analyzed 28 patients with known liver cirrhosis who died during the study period, revealed significant insights into the care these patients received. The average age of patients was 44 to 79 years (mean 59), with 61% being male. The average length of stay was 22 days, and the mean MELD-Na score was 26, indicating severe liver disease. A significant majority (93%) had at least one previous decompensation documented before their admission, highlighting the chronic and progressive nature of their condition.

The utilization of various medical interventions was notable:

  • 86% received antibiotics
  • 40% underwent at least one endoscopy
  • 79% had at least one specialist consultation
  • 71% had at least three diagnostic images
  • 25% required ICU admission
  • 14% needed new dialysis
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Utilization Trends and PAL-LIVER

A national analysis of decompensated liver disease found palliative care utilization rose from 49.11% in 2016 to 56.85% in 2019, then decreased slightly to 54.47% in 2020. The PAL-LIVER trial (NCT03540771) is a comparative effectiveness study of hepatologist-led versus specialist-led consultative palliative care for ambulatory patients with advanced liver disease. The supplied sources describe the trial's purpose, not its results.

Limits of the Evidence

A systematic review of supportive and palliative care needs in advanced non-malignant liver disease did not identify the best service model. The LiverCare intervention study also cautioned that its feasibility design, relatively small sample, and lack of a control group limit its ability to detect meaningful changes in patient-reported outcomes. These limitations leave uncertainty about which model works best and how reliably early studies can measure its effects.

Home Palliative Care Outcomes

A cohort analysis of people with end-stage liver disease reported fewer hospital admissions among patients receiving home palliative care: 1.06 compared with 2.61 admissions (p = 0.000). The study also reported a higher probability of death at home for this group, 66.7% versus 33.3% (p = 0.000). These are cohort findings and, as reported in the source, do not by themselves establish that home palliative care caused the differences.

Despite the intensity of medical interventions, a concerning number of patients did not receive adequate consideration for palliative care or have their wishes documented. Most patients (68%) did not have eligibility for liver transplantation detailed anywhere in their chart during hospitalization, and this was not documented previously for 75% of patients. Moreover, while patients had a mean of 3.2 emergency department visits and 2.3 clinic visits in the 6 months before admission, only 46% saw a hepatologist during that time. Furthermore, only 14% received palliative care before death, and a mere 7% had documented outpatient goals of care discussions within 2 years before death.

The Imperative for Improved Palliative Care Integration

This study underscores a critical need to improve the integration of palliative care for patients with decompensated liver disease. The findings reveal that while these patients often have high MELD-Na scores and prolonged admissions, indicating significant disease burden, very few have documented goals of care discussions or assessments of their eligibility for liver transplantation.

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Guideline-Informed Symptom Management

A 2025 review of English-language literature examines general palliative care principles for people with chronic liver disease and end-stage liver disease. It considers factors affecting quality of life and reviews symptom management in relation to AASLD and AGA guidelines. The source presents this as a review of existing principles and guidance, rather than a report of new trial findings.

Expanding and Sustaining Access

A 2026 article reports that people with advanced liver disease often face serious health challenges while having limited access to palliative care. Another source describes early and consistent palliative care implementation as important for quality of life, reducing hardship, and supporting decision-making for people with serious illness. Together, these sources point to access and consistent implementation as priorities, without specifying a particular future service model.

Clinician Perspectives and Prescribing

An embedded qualitative evaluation within the 19-site randomized PAL-LIVER comparative effectiveness trial examined clinicians’ perspectives on providing integrated palliative care in advanced liver disease. The evaluation was designed to understand clinicians’ experience of this care, rather than to report a patient outcome in the supplied snippet. A separate patient case study resource focuses on complex prescribing challenges and symptom control for health professionals supporting people with end-stage liver disease.

The underutilization of palliative care and the lack of documented care goals highlight a systemic gap in addressing the holistic needs of these patients. Early integration of palliative care can facilitate crucial conversations about patient preferences, manage symptoms, and improve the overall quality of life during the final stages of the disease.

Healthcare providers should prioritize proactive discussions about palliative care options, ensuring that patients' wishes are understood and respected. Furthermore, regular assessments of transplant eligibility and thorough documentation are essential to guide appropriate care decisions. By addressing these gaps, healthcare systems can better support patients with decompensated liver disease, providing them with compassionate and comprehensive care that aligns with their values and preferences.

What the reported figures measure in advanced liver disease

  • 84% specificityThe same score had 84% specificity.[1]
  • 81% positive predictive valueIts positive predictive value was 81%.[1]
  • 5% of patientsHospice use in the multinational inpatient cohort was 5%.[2]
  • 0.816 c-statisticThe HELP scale had a c-statistic of 0.816 in its build sample.[3]
  • 29% mortalityThe SUPPORT study reported 29% mortality among patients at their first hospitalization episode.[4]
  • up to 70% of patientsEven patients with low MELD scores may have high symptom burden; the reported proportion was up to 70%.[4]

How other liver-care evidence compares

The Bristol score uses several clinical and care-related criteria to flag mortality risk, while the HELP scale reports how well a hospice prognostic scale performed in its development sample; these are risk-assessment findings, not direct measures of palliative-care benefit.[1] [3]

A randomized trial reported lower readmission hazard and more days alive outside hospital with palliative care, while a separate retrospective analysis reported fewer 30-day readmissions and shorter stays after inpatient consultation for a defined alcohol-associated liver disease group. The latter design limits how firmly its association can be interpreted as an effect of consultation.[5]

The multinational inpatient cohort connects low hospice use with deaths among people not discharged to hospice, but these figures do not establish why hospice was not used or whether discharge there would have changed outcomes.[2]

What remains uncertain in liver palliative care

  • Would evidence from settings beyond North America show similar patterns for people with end-stage liver disease on transplant waiting lists?[6]
  • What practical symptom-management guidance can help hepatologists address the needs that existing literature has described but not translated into clear clinical direction?[7]

Sources

  1. EASL position paper on palliative care in advanced chronic liver disease (pmc.ncbi.nlm.nih.gov)
  2. Underutilization of Hospice in Inpatients with Cirrhosis: The NACSELD Experience. (pubmed.ncbi.nlm.nih.gov)
  3. Consider hospice in end‐stage liver disease prognostic scale to open discussions regarding six‐month mortality (pmc.ncbi.nlm.nih.gov)
  4. Symptom burden in end-stage liver disease: a prospective cohort study of the symptoms experienced by patients and the role of palliative care (pmc.ncbi.nlm.nih.gov)
  5. Palliative care for end-stage liver disease and acute on chronic liver failure: A systematic review (pmc.ncbi.nlm.nih.gov)
  6. Palliative Care for Patients with End-Stage Liver Disease on the Liver Transplant Waiting List: An International Systematic Review - UCL Discovery (discovery.ucl.ac.uk)
  7. Symptom Management in Patients with Cirrhosis: a Practical Guide (pmc.ncbi.nlm.nih.gov)

About this Article -

Written with AI assistance from published research, and reviewed by the Mystum team. See our About page for more information.

Everything You Need To Know

1

What is the significance of MELD-Na scores in the context of end-stage liver disease?

MELD-Na scores are crucial because they indicate the severity of liver disease. A high MELD-Na score, such as the mean of 26 observed in the study, suggests severe liver disease and is associated with increased mortality risk. These scores help in prioritizing patients for liver transplantation and assessing the urgency of their medical needs. However, the study revealed that despite high MELD-Na scores among patients with decompensated liver disease, discussions about liver transplantation eligibility and goals of care were often lacking.

2

Why is palliative care underutilized in patients with decompensated liver cirrhosis, and what are the implications of this underutilization?

Palliative care is underutilized due to several factors, including a lack of awareness among healthcare providers about its benefits for patients with liver cirrhosis, challenges in prognostication, and a focus on disease-modifying treatments rather than quality-of-life interventions. The implications of this underutilization are significant: patients may experience unnecessary suffering, prolonged hospital stays, and a failure to address their holistic needs, including physical, emotional, and spiritual well-being. Integrating palliative care earlier could improve patient comfort, reduce hospital readmissions, and align treatment with patient values and preferences.

3

What specific interventions were commonly used in the care of patients with decompensated liver disease, and how does this compare to the utilization of palliative care?

The study highlighted that patients with decompensated liver disease frequently received medical interventions such as antibiotics (86%), endoscopies (40%), specialist consultations (79%), and diagnostic imaging (71%). Additionally, a notable percentage required ICU admission (25%) and new dialysis (14%). In stark contrast, only 14% received palliative care before death. This discrepancy underscores a significant gap in care, suggesting that while aggressive medical treatments are common, holistic, comfort-focused care is often overlooked, potentially leading to a lower quality of life for patients in their final stages.

4

How does the lack of documented goals of care discussions impact patients with decompensated liver disease, and what steps can be taken to improve this?

The absence of documented goals of care discussions, as highlighted by the study's finding that only 7% of patients had these discussions documented, means that patients' wishes and preferences regarding their end-of-life care may not be adequately considered or respected. This can lead to unwanted or ineffective treatments, increased distress for patients and families, and a sense of loss of control over their healthcare decisions. To improve this, healthcare providers should proactively initiate goals of care conversations, document these discussions thoroughly, and ensure that patients' values and preferences guide treatment decisions. Standardized protocols and training programs can facilitate these discussions and promote a patient-centered approach to care.

5

What are the key barriers to assessing eligibility for liver transplantation in patients with decompensated liver disease, and how can these barriers be overcome?

Several barriers contribute to the lack of documented liver transplantation eligibility assessments. These include time constraints, a focus on managing acute complications, uncertainty about prognosis, and a lack of standardized assessment protocols. Overcoming these barriers requires a multi-faceted approach: Implementing systematic screening processes, providing education and training to healthcare providers on transplant eligibility criteria, and fostering interdisciplinary collaboration between hepatologists, palliative care specialists, and transplant teams. By addressing these challenges, healthcare systems can ensure that all eligible patients are considered for transplantation and that those who are not eligible receive appropriate palliative care to manage their symptoms and improve their quality of life.

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