Palliative care: End stage liver disease
- Anne M Walling, MD, PhD
Anne M Walling, MD, PhD
- Assistant Professor
- University of California, Los Angeles
- Neil Wenger, MD
Neil Wenger, MD
- Professor of Medicine
- University of California, Los Angeles
- Section Editors
- R Sean Morrison, MD
R Sean Morrison, MD
- Section Editor — Selected End Stage Conditions
- Hermann Merkin Professor of Palliative Care
- Mount Sinai School of Medicine
- Sanjiv Chopra, MD, MACP
Sanjiv Chopra, MD, MACP
- Editor-in-Chief — Gastroenterology/Hepatology
- Section Editor — General Hepatology; Gallbladder and Biliary Tract Disease
- Professor of Medicine
- Harvard Medical School
- Senior Consultant in Hepatology
- James Tullis Firm Chief
- Beth Israel Deaconess Medical Center
- Deputy Editors
- Diane MF Savarese, MD
Diane MF Savarese, MD
- Senior Deputy Editor — UpToDate
- Deputy Editor — Oncology and Palliative Care
- Clinical Instructor of Medicine
- Harvard Medical School
- Kristen M Robson, MD, MBA, FACG
Kristen M Robson, MD, MBA, FACG
- Assistant Professor
- Tufts University School of Medicine
Palliative care is an interdisciplinary medical specialty that focuses on preventing and relieving suffering, and on supporting the best possible quality of life for patients facing serious illness and their families. The primary tenets of palliative care are symptom management; establishing goals of care that are in keeping with the patient’s values and preferences; consistent and sustained communication between the patient and all those involved in his or her care; and psychosocial, spiritual, and practical support both to patients and their family caregivers. Palliative care is applicable early in the course of terminal illness in conjunction with other therapies that are intended to prolong life; it is not limited to end of life care . Palliative services, including setting patient-centered achievable goals for medical care and aggressive symptom management, should be routinely offered alongside curative and disease-modifying treatments for patients with serious illnesses (the simultaneous care model). (See "Benefits, services, and models of subspecialty palliative care", section on 'Rationale for palliative care'.)
Palliative care has been best studied and implemented among patients with malignancy, yet there is growing evidence of the many benefits of integration of palliative care for a variety of advanced illnesses. Despite being the 12th most common cause of death in the United States , end stage liver disease (ESLD) has only recently become a focus of palliative care research.
Palliative care issues in adult patients with ESLD will be reviewed here. An overview of the benefits, services, and models of subspecialty palliative care is provided elsewhere. (See "Benefits, services, and models of subspecialty palliative care".)
DEFINITIONS, CLINICAL COURSE, AND CAUSES OF DEATH
Cirrhosis versus end stage liver disease — Cirrhosis represents the irreversible late stage of chronic progressive liver disease; it is characterized by the distortion of hepatic architecture and the formation of regenerative nodules. Patients with cirrhosis who have not developed major complications are classified as having compensated cirrhosis. Patients who have developed complications of cirrhosis, such as variceal hemorrhage, ascites, spontaneous bacterial peritonitis, hepatocellular carcinoma (HCC), hepatorenal syndrome, or hepatopulmonary syndrome, are considered to have decompensated cirrhosis. These complications are the primary causes of death in ESLD. (See "Cirrhosis in adults: Overview of complications, general management, and prognosis".)
The term “end stage liver disease” is synonymous with advanced liver disease, liver failure, and decompensated cirrhosis, given the general irreversibility of these conditions [3-5]. However, in contrast to other terminal illnesses, liver transplantation can be a definitive and potentially curative treatment for irreversible liver disease. While liver transplantation is a viable treatment option for patients with decompensated cirrhosis (and for patients who develop HCC in the setting of cirrhosis as long as they meet criteria for listing), many are not candidates for transplantation because of clinical and social factors. Furthermore, the number of patients who qualify for transplantation is much greater than the availability of donor organs. Because of wait times for organ transplantation, approximately 14 percent of patients on a transplant waitlist die annually . Many others will be delisted as they become too ill for transplantation. Thus, even with the hope of transplant, most patients with decompensated cirrhosis will die as a result of their underlying illness [7,8]. It may seem counterintuitive to initiate palliative care for patients considered for transplant because of the potential for cure; however, the potential for adverse outcomes and significant symptom burden is also high. Therefore, it is appropriate to initiate palliative care, even while recognizing the possibility of long-term survival. (See "Cirrhosis in adults: Overview of complications, general management, and prognosis", section on 'Liver transplantation' and "Liver transplantation in adults: Patient selection and pretransplantation evaluation" and "Staging and prognostic factors in hepatocellular carcinoma" and "Liver transplantation for hepatocellular carcinoma".)
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- DEFINITIONS, CLINICAL COURSE, AND CAUSES OF DEATH
- Cirrhosis versus end stage liver disease
- Disease trajectory and estimating prognosis
- - Child-Pugh classification
- - MELD score
- - Other important prognostic variables
- USE AND BENEFITS OF PALLIATIVE CARE
- What is the difference between palliative care and hospice?
- What is the difference between primary and secondary (subspecialty) palliative care?
- Current state of palliative care in ESLD
- - Challenges
- Indications for a specialty palliative care consultation
- What are the important components of palliative care in ESLD?
- - Symptom burden and management
- Ascites management
- Variceal hemorrhage
- Other symptoms
- - Pruritus
- - Muscle cramps
- - Anorexia/cachexia
- Advance care planning
- - When to begin the discussion
- Considerations for end of life care and hospice referral
- CAREGIVER BURDEN AND SUPPORT FOR CAREGIVERS
- INFORMATION FOR PATIENTS