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Palliative care: End stage liver disease

Anne M Walling, MD, PhD
Neil Wenger, MD
Section Editors
R Sean Morrison, MD
Sanjiv Chopra, MD, MACP
Deputy Editors
Diane MF Savarese, MD
Kristen M Robson, MD, MBA, FACG


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 [1]. 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 [2], 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".)


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 [6]. 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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Literature review current through: May 2017. | This topic last updated: Mar 07, 2017.
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  1. World Heealth Organization. Guidelines for palliative care. http://www.who.int/entity/cancer/palliative/definition/en (Accessed on August 22, 2016).
  2. Deaths: Final data for 2013. Natl Vital Stats Rep 2016; 64(2). Publication available online at http://www.cdc.gov/nchs/data/nvsr/nvsr64/nvsr64_02.pdf (Accessed on August 17, 2016).
  3. Cox-North P, Doorenbos A, Shannon SE, et al. The transition to end-of-life care in end-stage liver disease. J Hosp Palliat Nurs 2013; 15:209.
  4. Sanchez W, Talwalkar JA. Palliative care for patients with end-stage liver disease ineligible for liver transplantation. Gastroenterol Clin North Am 2006; 35:201.
  5. Bobb BT, Coyne PJ. Compendium of Treatment of End Stage Non-Cancer Diagnoses: Hepatic. 2nd ed. Hospice and Palliative Nurses Association, Pittsburgh PA. 2012; www.AdvancingExpertCare.org/
  6. http://srtr.transplant.hrsa.gov/annual_reports/2012/pdf/03_liver_13.pdf (Accessed on August 22, 2016).
  7. National Institute on Alcohol Abuse and Alcoholism (NIAAA): Liver Cirrhosis in the United States, 1970-2005 http://pubs.niaaa.nih.gov/publications/surveillance83/Cirr05.htm (Accessed on September 22, 2015).
  8. United Network for Organ Sharing. Transplants by Organ Type-2005 https://www.unos.org/data/transplant-trends/#transplants_by_organ_type+year+2005 (Accessed on September 22, 2015).
  9. Dolan B, ARnold R. Prognosis in decompensated chronic liver failure. Fast Facts and Concepts #189. 2007. Available at: http://www.mypcnow.org/blank-t9wv6 (Accessed on August 18, 2016).
  10. D'Amico G, Garcia-Tsao G, Pagliaro L. Natural history and prognostic indicators of survival in cirrhosis: a systematic review of 118 studies. J Hepatol 2006; 44:217.
  11. Pugh RN, Murray-Lyon IM, Dawson JL, et al. Transection of the oesophagus for bleeding oesophageal varices. Br J Surg 1973; 60:646.
  12. Infante-Rivard C, Esnaola S, Villeneuve JP. Clinical and statistical validity of conventional prognostic factors in predicting short-term survival among cirrhotics. Hepatology 1987; 7:660.
  13. Albers I, Hartmann H, Bircher J, Creutzfeldt W. Superiority of the Child-Pugh classification to quantitative liver function tests for assessing prognosis of liver cirrhosis. Scand J Gastroenterol 1989; 24:269.
  14. Wiesner R, Edwards E, Freeman R, et al. Model for end-stage liver disease (MELD) and allocation of donor livers. Gastroenterology 2003; 124:91.
  15. Cholongitas E, Papatheodoridis GV, Vangeli M, et al. Systematic review: The model for end-stage liver disease--should it replace Child-Pugh's classification for assessing prognosis in cirrhosis? Aliment Pharmacol Ther 2005; 22:1079.
  16. Poca M, Puente A, Graupera I, Villanueva C. Prognostic markers in patients with cirrhosis and portal hypertension who have not bled. Dis Markers 2011; 31:147.
  17. Salpeter SR, Luo EJ, Malter DS, Stuart B. Systematic review of noncancer presentations with a median survival of 6 months or less. Am J Med 2012; 125:512.e1.
  18. Allegretti AS, Ortiz G, Wenger J, et al. Prognosis of Acute Kidney Injury and Hepatorenal Syndrome in Patients with Cirrhosis: A Prospective Cohort Study. Int J Nephrol 2015; 2015:108139.
  19. Boyd K, Kimbell B, Murray S, Iredale J. Living and dying well with end-stage liver disease: time for palliative care? Hepatology 2012; 55:1650.
  20. Chen WT, Lin CY, Sheen IS, et al. MELD score can predict early mortality in patients with rebleeding after band ligation for variceal bleeding. World J Gastroenterol 2011; 17:2120.
  21. Kim WR, Biggins SW, Kremers WK, et al. Hyponatremia and mortality among patients on the liver-transplant waiting list. N Engl J Med 2008; 359:1018.
  22. Meghani SH, Hinds PS. Policy brief: the Institute of Medicine report Dying in America: Improving quality and honoring individual preferences near the end of life. Nurs Outlook 2015; 63:51.
  23. Quill TE, Abernethy AP. Generalist plus specialist palliative care--creating a more sustainable model. N Engl J Med 2013; 368:1173.
  24. Younossi ZM, Boparai N, Price LL, et al. Health-related quality of life in chronic liver disease: the impact of type and severity of disease. Am J Gastroenterol 2001; 96:2199.
  25. Bjørk IT, Nåden D. Patients' experiences of waiting for a liver transplantation. Nurs Inq 2008; 15:289.
  26. Brown J, Sorrell JH, McClaren J, Creswell JW. Waiting for a liver transplant. Qual Health Res 2006; 16:119.
  27. Martin SC, Stone AM, Scott AM, Brashers DE. Medical, personal, and social forms of uncertainty across the transplantation trajectory. Qual Health Res 2010; 20:182.
  28. Roth K, Lynn J, Zhong Z, et al. Dying with end stage liver disease with cirrhosis: insights from SUPPORT. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Am Geriatr Soc 2000; 48:S122.
  29. Poonja Z, Brisebois A, van Zanten SV, et al. Patients with cirrhosis and denied liver transplants rarely receive adequate palliative care or appropriate management. Clin Gastroenterol Hepatol 2014; 12:692.
  30. Baumann AJ, Wheeler DS, James M, et al. Benefit of Early Palliative Care Intervention in End-Stage Liver Disease Patients Awaiting Liver Transplantation. J Pain Symptom Manage 2015; 50:882.
  31. Lai JC, Dodge JL, Sen S, et al. Functional decline in patients with cirrhosis awaiting liver transplantation: Results from the functional assessment in liver transplantation (FrAILT) study. Hepatology 2016; 63:574.
  32. Larson AM, Curtis JR. Integrating palliative care for liver transplant candidates: "too well for transplant, too sick for life". JAMA 2006; 295:2168.
  33. Teno JM, Clarridge BR, Casey V, et al. Family perspectives on end-of-life care at the last place of care. JAMA 2004; 291:88.
  34. Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000; 284:2476.
  35. Singer PA, Martin DK, Kelner M. Quality end-of-life care: patients' perspectives. JAMA 1999; 281:163.
  36. Walling AM, Asch SM, Lorenz KA, Wenger NS. Impact of consideration of transplantation on end-of-life care for patients during a terminal hospitalization. Transplantation 2013; 95:641.
  37. Medici V, Rossaro L, Wegelin JA, et al. The utility of the model for end-stage liver disease score: a reliable guide for liver transplant candidacy and, for select patients, simultaneous hospice referral. Liver Transpl 2008; 14:1100.
  38. Lamba S, Murphy P, McVicker S, et al. Changing end-of-life care practice for liver transplant service patients: structured palliative care intervention in the surgical intensive care unit. J Pain Symptom Manage 2012; 44:508.
  39. Walling AM, Schreibeis-Baum H, Pimstone N, et al. Proactive case finding to improve concurrently curative and palliative care in patients with end-stage liver disease. J Palliat Med 2015; 18:378.
  40. Rossaro L, Troppmann C, McVicar JP, et al. A strategy for the simultaneous provision of pre-operative palliative care for patients awaiting liver transplantation. Transpl Int 2004; 17:473.
  41. Beck KR, Pantilat SZ, O'Riordan DL, Peters MG. Use of Palliative Care Consultation for Patients with End-Stage Liver Disease: Survey of Liver Transplant Service Providers. J Palliat Med 2016; 19:836.
  42. Boyd K, Murray SA. Recognising and managing key transitions in end of life care. BMJ 2010; 341:c4863.
  43. Kim SH, Oh EG, Lee WH, et al. Symptom experience in Korean patients with liver cirrhosis. J Pain Symptom Manage 2006; 31:326.
  44. Desbiens NA, Wu AW. Pain and suffering in seriously ill hospitalized patients. J Am Geriatr Soc 2000; 48:S183.
  45. Bianchi G, Marchesini G, Nicolino F, et al. Psychological status and depression in patients with liver cirrhosis. Dig Liver Dis 2005; 37:593.
  46. Santos GR, Boin IF, Pereira MI, et al. Anxiety levels observed in candidates for liver transplantation. Transplant Proc 2010; 42:513.
  47. Kimbell B, Murray SA. What is the patient experience in advanced liver disease? A scoping review of the literature. BMJ Support Palliat Care 2015; 5:471.
  48. Marchesini G, Bianchi G, Amodio P, et al. Factors associated with poor health-related quality of life of patients with cirrhosis. Gastroenterology 2001; 120:170.
  49. Kanwal F, Hays RD, Kilbourne AM, et al. Are physician-derived disease severity indices associated with health-related quality of life in patients with end-stage liver disease? Am J Gastroenterol 2004; 99:1726.
  50. Saab S, Ibrahim AB, Shpaner A, et al. MELD fails to measure quality of life in liver transplant candidates. Liver Transpl 2005; 11:218.
  51. Perri GA. Ascites in patients with cirrhosis. Can Fam Physician 2013; 59:1297.
  52. Kathpalia P, Bhatia A, Robertazzi S, et al. Indwelling peritoneal catheters in patients with cirrhosis and refractory ascites. Intern Med J 2015; 45:1026.
  53. Bajaj JS, Wade JB, Gibson DP, et al. The multi-dimensional burden of cirrhosis and hepatic encephalopathy on patients and caregivers. Am J Gastroenterol 2011; 106:1646.
  54. Xander C, Meerpohl JJ, Galandi D, et al. Pharmacological interventions for pruritus in adult palliative care patients. Cochrane Database Syst Rev 2013; :CD008320.
  55. Berger L, Popov AG, Berger B. Case Report: Relieving the Itch of Cholestasis with Corticosteroids in Palliative Care. J Palliat Med 2015; 18:913.
  56. Dillon S, Tobias JD. Ondansetron to treat pruritus due to cholestatic jaundice. J Pediatr Pharmacol Ther 2013; 18:241.
  57. Hasse J, Strong S, Gorman MA, Liepa G. Subjective global assessment: alternative nutrition-assessment technique for liver-transplant candidates. Nutrition 1993; 9:339.
  58. Curtis JR. Palliative and end-of-life care for patients with severe COPD. Eur Respir J 2008; 32:796.
  59. Jackson VA, Jacobsen J, Greer JA, et al. The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: a communication guide. J Palliat Med 2013; 16:894.
  60. Miyazaki ET, Dos Santos R Jr, Miyazaki MC, et al. Patients on the waiting list for liver transplantation: caregiver burden and stress. Liver Transpl 2010; 16:1164.
  61. Rakoski MO, McCammon RJ, Piette JD, et al. Burden of cirrhosis on older Americans and their families: analysis of the health and retirement study. Hepatology 2012; 55:184.
  62. Bernacki RE, Block SD, American College of Physicians High Value Care Task Force. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med 2014; 174:1994.
  63. Curtis JR, Wenrich MD, Carline JD, et al. Patients' perspectives on physician skill in end-of-life care: differences between patients with COPD, cancer, and AIDS. Chest 2002; 122:356.
  64. Knauft E, Nielsen EL, Engelberg RA, et al. Barriers and facilitators to end-of-life care communication for patients with COPD. Chest 2005; 127:2188.
  65. Walling AM, Ahluwalia SC, Wenger NS, et al. Palliative Care Quality Indicators for Patients with End-Stage Liver Disease Due to Cirrhosis. Dig Dis Sci 2017; 62:84.
  66. Lisotti A, Fusaroli P, Caletti G. Palliative care in patients with liver cirrhosis: it is the time to deal with the burden. BMJ Support Palliat Care 2015; 5:466.
  67. Rodrigue JR, Dimitri N, Reed A, et al. Quality of life and psychosocial functioning of spouse/partner caregivers before and after liver transplantation. Clin Transplant 2011; 25:239.
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