Log in

Optimising End of Life Care for Patients With End Stage Liver Disease: A Review

  • Review
  • Published:
Current Hepatology Reports Aims and scope Submit manuscript

Abstract

Purpose of Review

This review describes the challenges and possible solutions for improving access for patients with end stage liver disease to palliative care expertise. Although progress has been made, with consensus guidelines being published by learned societies, there remains significant variability.

Recent Findings

The develo** evidence base describes improved medical and psychological outcomes for patients and caregivers when access to skilled palliative care exists. This may be provided by palliative care specialists or hepatologists/specialist nurses who have been upskilled. These skills include the ability to describe prognostic uncertainty, focussed inquiry into liver failure-related symptoms, pharmacology in liver disease, and awareness of liver transplantation indications/contra-indications. Willingness to engage sensitively in advance care planning, which is integral to improved patient experience, reduced admissions and establishment of the patient’s goals, is required by all clinical staff who care for end stage liver disease patients. Barriers to engagement are located at the patient, physician/nurse and organisational levels.

Summary

Future organisational and clinical strategies to promote access to palliative care include: specialist multidisciplinary clinics, advanced liver disease multidisciplinary meetings (MDM), empowerment of allied health team members, collaborations, ambulatory/day care units, physician education and patient education. Further high-quality research, including randomised controlled trials, is required to strengthen the evidence base and focus resources.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Subscribe and save

Springer+ Basic
EUR 32.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or Ebook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

Price includes VAT (Germany)

Instant access to the full article PDF.

Fig. 1

Similar content being viewed by others

References

Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance

  1. Williams R, Aspinall R, Bellis M, Camps-Walsh G, Cramp M, Dhawan A, et al. Addressing liver disease in the UK: a blueprint for attaining excellence in health care and reducing premature mortality from lifestyle issues of excess consumption of alcohol, obesity, and viral hepatitis. The Lancet. 2014;384(9958):1953–97.

    Article  Google Scholar 

  2. Mokdad AA, Lopez AD, Shahraz S, Lozano R, Mokdad AH, Stanaway J, et al. Liver cirrhosis mortality in 187 countries between 1980 and 2010: a systematic analysis. BMC Med. 2014;12(1):1–24.

    Article  Google Scholar 

  3. Udompap P, Kim D, Kim WR. Current and future burden of chronic nonmalignant liver disease. Clin Gastroenterol Hepatol. 2015;13(12):2031–41.

    Article  PubMed  PubMed Central  Google Scholar 

  4. 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(1):217–31.

    Article  PubMed  Google Scholar 

  5. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005;330(7498):1007–11.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Jadlowiec CC, Taner T. Liver transplantation: current status and challenges. World J Gastroenterol. 2016;22(18):4438.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  7. Neuberger J. Liver transplantation in the United Kingdom. Liver Transpl. 2016;22(8):1129–35.

    Article  PubMed  Google Scholar 

  8. NHS Blood and Transplant. Annual report on liver transplantation, 2018. Available at https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/12250/nhsbt-livertransplantation-annual-report-2017-2018.pdf. 2018.

  9. Woodland H, Hudson B, Forbes K, McCune A, Wright M. Palliative care in liver disease: what does good look like? Front Gastroenterol. 2020;11(3):218–27. This paper is important as for the first time there is some guidance on how end of life care in chronic liver disease should look like..

    Article  Google Scholar 

  10. Mazzarelli C, Prentice WM, Heneghan MA, Belli LS, Agarwal K, Cannon MD. Palliative care in end-stage liver disease: Time to do better? Liver Transpl. 2018;24(7):961–8.

    Article  PubMed  Google Scholar 

  11. Tandon P, Walling A, Patton H, Taddei T. AGA clinical practice update on palliative care management in cirrhosis: expert review. Clinical Gastroenterology and Hepatology. 2021;19(4):646-56.e3.

    Article  PubMed  Google Scholar 

  12. Rogal SS, Hansen L, Patel A, Ufere NN, Verma M, Woodrell CD, et al. AASLD Practice Guidance: palliative care and symptom-based management in decompensated cirrhosis. Hepatology. 2022;76(3):819–53. This is the first official guideline from a society in palliative case in liver disease..

    Article  PubMed  Google Scholar 

  13. Hudson B, Hunt V, Waylen A, McCune CA, Verne J, Forbes K. The incompatibility of healthcare services and end-of-life needs in advanced liver disease: a qualitative interview study of patients and bereaved carers. Palliat Med. 2018;32(5):908–18.

    Article  PubMed  Google Scholar 

  14. Carbonneau M, Davyduke T, Spiers J, Brisebois A, Ismond K, Tandon P. Patient views on advance care planning in cirrhosis: a qualitative analysis. Can J Gastroenterol Hepatol. 2018;2018:4040518. https://doi.org/10.1155/2018/4040518.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Kotha S, Berry P. The writing was on the wall: decision making near the end of life in advanced liver disease. Progress in Palliative Care. 2022;30(6):349–55.

    Article  Google Scholar 

  16. Hareendran A, Devadas K, Sreesh S, Tom Oommen T, Varghese J, Lubina S, et al. Quality of life, caregiver burden and mental health disorders in primary caregivers of patients with cirrhosis. Liver Int. 2020;40(12):2939–49.

    Article  CAS  PubMed  Google Scholar 

  17. Bajaj JS, Wade JB, Gibson DP, Heuman DM, Thacker LR, Sterling RK, et al. The multi-dimensional burden of cirrhosis and hepatic encephalopathy on patients and caregivers. Am J Gastroenterol. 2011;106(9):1646.

    Article  PubMed  PubMed Central  Google Scholar 

  18. World Health Organization. National cancer control programmes: policies and managerial guidelines. 2nd ed. World Health Organization; 2002. https://iris.who.int/handle/10665/42494.

    Google Scholar 

  19. Mudumbi SK, Bourgeois CE, Hoppman NA, Smith CH, Verma M, Bakitas MA, et al. Palliative care and hospice interventions in decompensated cirrhosis and hepatocellular carcinoma: a rapid review of literature. J Palliat Med. 2018;21(8):1177–84.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Baumann AJ, Wheeler DS, James M, Turner R, Siegel A. Navarro VJ Benefit of early palliative care intervention in end-stage liver disease patients awaiting liver transplantation. J Pain Symp Manag. 2015;50(6):882-6.e2.

    Article  Google Scholar 

  21. May P, Normand C, Morrison RS. Economic impact of hospital inpatient palliative care consultation: review of current evidence and directions for future research. J Palliat Med. 2014;17(9):1054–63.

    Article  PubMed  PubMed Central  Google Scholar 

  22. Morrison RS, Penrod JD, Cassel JB, Caust-Ellenbogen M, Litke A, Spragens L, et al. Cost savings associated with US hospital palliative care consultation programs. Arch Intern Med. 2008;168(16):1783–90.

    Article  PubMed  Google Scholar 

  23. Patel AA, Walling AM, Ricks-Oddie J, May FP, Saab S, Wenger N. Palliative care and health care utilization for patients with end-stage liver disease at the end of life. Clin Gastroenterol Hepatol. 2017;15(10):1612-9.e4.

    Article  PubMed  PubMed Central  Google Scholar 

  24. McMahan RD, Tellez I, Sudore RL. Deconstructing the complexities of advance care planning outcomes: what do we know and where do we go? A sco** review. J Am Geriatr Soc. 2021;69(1):234–44.

    Article  PubMed  Google Scholar 

  25. Low JT, Rohde G, Pittordou K, Candy B, Davis S, Marshall A, et al. Supportive and palliative care in people with cirrhosis: international systematic review of the perspective of patients, family members and health professionals. J Hepatol. 2018;69(6):1260–73.

    Article  PubMed  Google Scholar 

  26. Wang CW, Lebsack A, Sudore RL, Lai JC. Low rates of advance care planning (ACP) discussions despite readiness to engage in ACP among liver transplant candidates. Dig Dis Sci. 2021;66:1446–51.

    Article  PubMed  Google Scholar 

  27. Sprange A, Ismond KP, Hjartarson E, Chavda S, Carbonneau M, Kowalczewski J, et al. Advance care planning preferences and readiness in cirrhosis: a prospective assessment of patient perceptions and knowledge. J Palliat Med. 2020;23(4):552–7.

    Article  PubMed  Google Scholar 

  28. Yadav KN, Gabler NB, Cooney E, Kent S, Kim J, Herbst N, et al. Approximately one in three US adults completes any type of advance directive for end-of-life care. Health Aff. 2017;36(7):1244–51.

    Article  Google Scholar 

  29. Ufere NN, Donlan J, Waldman L, Dienstag JL, Friedman LS, Corey KE, et al. Barriers to use of palliative care and advance care planning discussions for patients with end-stage liver disease. Clin Gastroenterol Hepatol. 2019;17(12):2592–9.

    Article  PubMed  PubMed Central  Google Scholar 

  30. Low J, Davis S, Vickerstaff V, Greenslade L, Hopkins K, Langford A, et al. Advanced chronic liver disease in the last year of life: a mixed methods study to understand how care in a specialist liver unit could be improved. BMJ Open. 2017;7(8): e016887.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Highet G, Crawford D, Murray SA, Boyd K. Development and evaluation of the Supportive and Palliative Care Indicators Tool (SPICT): a mixed-methods study. BMJ Support Palliat Care. 2014;4(3):285–90.

    Article  PubMed  Google Scholar 

  32. Bowers SP, Clare K, Hagerty L, McColl K, Smith E, Brown-Kerr A, et al. Predicting 1-year mortality among patients with decompensated cirrhosis: results of a multicentre evaluation of the Bristol Prognostic Score. BMJ Open Gastroenterol. 2022;9(1): e000822.

    Article  PubMed  PubMed Central  Google Scholar 

  33. Gomez-Batiste X, Martinez-Munoz M, Blay C, Amblas J, Vila L, Costa X, et al. Utility of the NECPAL CCOMS-ICO© tool and the Surprise Question as screening tools for early palliative care and to predict mortality in patients with advanced chronic conditions: a cohort study. Palliat Med. 2017;31(8):754–63.

    Article  PubMed  Google Scholar 

  34. https://polst.org/advance-directives/. National POLST Advance Directives [Available from: https://polst.org/advance-directives/.

  35. Kimbell B, Boyd K, Kendall M, Iredale J, Murray SA. Managing uncertainty in advanced liver disease: a qualitative, multiperspective, serial interview study. BMJ Open. 2015;5(11): e009241.

    Article  PubMed  PubMed Central  Google Scholar 

  36. Miller K, Barman P, Kappus M. Palliative care and end of life care in decompensated cirrhosis. Clin Liver Dis. 2023;22(1):10.

    Article  Google Scholar 

  37. Kendall M, Carduff E, Lloyd A, Kimbell B, Cavers D, Buckingham S, et al. Different experiences and goals in different advanced diseases: comparing serial interviews with patients with cancer, organ failure, or frailty and their family and professional carers. J Pain Symptom Manage. 2015;50(2):216–24.

    Article  PubMed  Google Scholar 

  38. Santivasi WL, Strand JJ, Mueller PS, Beckman TJ. The organ transplant imperative. Mayo Clin Proc. 2017;92(6):940–6. https://doi.org/10.1016/j.mayocp.2017.03.005.

    Article  PubMed  Google Scholar 

  39. Rush B, Walley KR, Celi LA, Rajoriya N, Brahmania M. Palliative care access for hospitalized patients with end-stage liver disease across the United States. Hepatology. 2017;66(5):1585–91.

    Article  PubMed  Google Scholar 

  40. Chaudhary N, Lucero C, Villanueva G, Poles M, Gillespie C, Zabar S, et al. Assessment of abilities of gastroenterology fellows to provide information to patients with liver disease. Clin Gastroenterol Hepatol. 2017;15(7):1095-123.e3.

    Article  PubMed  Google Scholar 

  41. Peng J-K, Hepgul N, Higginson IJ, Gao W. Symptom prevalence and quality of life of patients with end-stage liver disease: a systematic review and meta-analysis. Palliat Med. 2019;33(1):24–36.

    Article  PubMed  Google Scholar 

  42. Bianchi G, Marchesini G, Nicolino F, Graziani R, Sgarbi D, Loguercio C, et al. Psychological status and depression in patients with liver cirrhosis. Dig Liver Dis. 2005;37(8):593–600.

    Article  CAS  PubMed  Google Scholar 

  43. Santos GR, Boin IF, Pereira MI, Bonato TC, Silva RC, Stucchi RS, da Silva RF. Anxiety levels observed in candidates for liver transplantation. Transplant Proc. 2010;42(2):513–6. https://doi.org/10.1016/j.transproceed.2010.01.009.

    Article  CAS  PubMed  Google Scholar 

  44. Bhanji R, Carey E, Watt K. maximising quality of life while aspiring for quantity of life in end-stage liver disease. Aliment Pharmacol Ther. 2017;46(1):16–25.

    Article  CAS  PubMed  Google Scholar 

  45. Liver BAftSot. Prescribing guidelines for patients with end stage liver disease [Available from: https://www.basl.org.uk/index.cfm/content/page/cid/33.

  46. Macken L, Hashim A, Potts J, et al. PWE-069 Care of patients with end stage liver disease and refractory ascites remains suboptimal: need for earlier input from palliative care. Gut. 2017;66:A161.

    Google Scholar 

  47. Planas R, Montoliu S, Ballesté B, Rivera M, Miquel M, Masnou H, et al. Natural history of patients hospitalized for management of cirrhotic ascites. Clin Gastroenterol Hepatol. 2006;4(11):1385-94.e1.

    Article  PubMed  Google Scholar 

  48. D’amico G, Pasta L, Morabito A, D’amico M, Caltagirone M, Malizia G, et al. Competing risks and prognostic stages of cirrhosis: a 25-year inception cohort study of 494 patients. Aliment Pharmacol Ther. 2014;39(10):1180–93.

    Article  CAS  PubMed  Google Scholar 

  49. Macken L, Corrigan M, Prentice W, Finlay F, McDonagh J, Rajoriya N, et al. Palliative long-term abdominal drains for the management of refractory ascites due to cirrhosis: a consensus document. Frontl Gastroenterol. 2022;13(e1):e116–25.

    Article  Google Scholar 

  50. Aithal GP, Palaniyappan N, China L, Härmälä S, Macken L, Ryan JM, et al. Guidelines on the management of ascites in cirrhosis. Gut. 2021;70(1):9–29.

    Article  PubMed  Google Scholar 

  51. Salerno F, Borroni G, Moser P, Badalamenti S, Cassarà L, Maggi A, et al. Survival and prognostic factors of cirrhotic patients with ascites: a study of 134 outpatients. Am J Gastroenterol. 1993;88(4):514–9.

  52. Oey RC, Buck LE, Erler NS, van Buuren HR, de Man RA. The efficacy and safety of rifaximin-α: a 2-year observational study of overt hepatic encephalopathy. Ther Adv Gastroenterol. 2019;12:1756284819858256.

    Article  Google Scholar 

  53. Fallahzadeh MA, Rahimi RS. Hepatic encephalopathy: current and emerging treatment modalities. Clin Gastroenterol Hepatol. 2022;20(8):S9–19.

    Article  PubMed  Google Scholar 

  54. Bobb B, Coyne P (2012) Compendium of treatment of end stage non-cancer diagnoses: hepatic. Pittsburgh, PA: Hospice and Palliative Nurses Association.

  55. Pate J, Gutierrez JA, Frenette CT, Goel A, Kumar S, Manch RA, et al. Practical strategies for pruritus management in the obeticholic acid-treated patient with PBC: proceedings from the 2018 expert panel. BMJ Open Gastroenterol. 2019;6(1): e000256.

    Article  PubMed  PubMed Central  Google Scholar 

  56. Merli M, Berzigotti A, Zelber-Sagi S, Dasarathy S, Montagnese S, Genton L, et al. EASL Clinical Practice Guidelines on nutrition in chronic liver disease. J Hepatol. 2019;70(1):172–93.

    Article  Google Scholar 

  57. Lai JC, Sonnenday CJ, Tapper EB, Duarte-Rojo A, Dunn MA, Bernal W, et al. Frailty in liver transplantation: an expert opinion statement from the American Society of Transplantation Liver and Intestinal Community of Practice. Am J Transplant. 2019;19(7):1896–906.

    Article  PubMed  PubMed Central  Google Scholar 

  58. Lai JC, Feng S, Terrault NA, Lizaola B, Hayssen H, Covinsky K. Frailty predicts waitlist mortality in liver transplant candidates. Am J Transplant. 2014;14(8):1870–9.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  59. Tsien CD, McCullough AJ, Dasarathy S. Late evening snack: exploiting a period of anabolic opportunity in cirrhosis. J Gastroenterol Hepatol. 2012;27(3):430–41.

    Article  CAS  PubMed  Google Scholar 

  60. Miyazaki ET, dos Santos JR, Miyazaki MC, Domingos NM, Felicio HC, Rocha MF, et al. Patients on the waiting list for liver transplantation: caregiver burden and stress. Liver Transpl. 2010;16(10):1164–8.

    Article  PubMed  Google Scholar 

  61. Ufere NN, Donlan J, Indriolo T, Richter J, Thompson R, Jackson V, et al. Burdensome transitions of care for patients with end-stage liver disease and their caregivers. Dig Dis Sci. 2021;66:2942–55.

    Article  PubMed  Google Scholar 

  62. Rodrigue JR, Dimitri N, Reed A, Antonellis T, Hanto DW, Curry M. Quality of life and psychosocial functioning of spouse/partner caregivers before and after liver transplantation. Clin Transplant. 2011;25(2):239–47.

    Article  PubMed  Google Scholar 

  63. El-Jawahri A, LeBlanc T, VanDusen H, Traeger L, Greer JA, Pirl WF, et al. Effect of inpatient palliative care on quality of life 2 weeks after hematopoietic stem cell transplantation: a randomized clinical trial. JAMA. 2016;316(20):2094–103.

    Article  PubMed  PubMed Central  Google Scholar 

  64. Rogers JG, Patel CB, Mentz RJ, Granger BB, Steinhauser KE, Fiuzat M, et al. Palliative care in heart failure: the PAL-HF randomized, controlled clinical trial. J Am Coll Cardiol. 2017;70(3):331–41.

    Article  PubMed  PubMed Central  Google Scholar 

  65. Verma M, Horrow J, Carmody S, Navarro V. (2023) Unmet needs and burden of caregivers of patients being evaluated for a liver transplant are similar to those of cancer caregivers. Am J Hosp Palliat Care https://doi.org/10.1177/10499091231176297.

  66. Arya A, Hernandez-Alejandro R, Marotta P, Uhanova J, Chandok N. Recipient ineligibility after liver transplantation assessment: a single centre experience. Can J Surg. 2013;56(3):E39.

    Article  PubMed  PubMed Central  Google Scholar 

  67. Standing H, Jarvis H, Orr J, Exley C, Hudson M, Kaner E, et al. How can primary care enhance end-of-life care for liver disease? Qualitative study of general practitioners’ perceptions and experiences. BMJ Open. 2017;7(8): e017106.

    Article  PubMed  PubMed Central  Google Scholar 

  68. Cheng Y-W, Sandrasegaran K, Cheng K, Shah A, Ghabril M, Berry W, et al. A dedicated paracentesis clinic decreases healthcare utilization for serial paracenteses in decompensated cirrhosis. Abdominal Radiology. 2018;43:2190–7.

    Article  PubMed  Google Scholar 

  69. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES—A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5:302–11. https://doi.org/10.1634/theoncologist.5-4-302.

  70. DeNofrio JC, Verma M, Kosinski AS, Navarro V, Taddei TH, Volk ML, et al. Palliative care always: hepatology-virtual primary palliative care training for hepatologists. Hepatol Commun. 2022;6(4):920–30. https://doi.org/10.1002/hep4.1849.

    Article  PubMed  Google Scholar 

  71. Verma M, Kosinski AS, Volk ML, Taddei T, Ramchandran K, Bakitas M, et al. Introducing palliative care within the treatment of end-stage liver disease: the study protocol of a cluster randomized controlled trial. J Palliat Med. 2019;22(S1):34–43. https://doi.org/10.1089/jpm.2019.0121.

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Contributions

SK- Conceived the idea, wrote the manuscript, CW- Wrote manuscript PB- Wrote and reviewed manuscript

Corresponding author

Correspondence to Sreelakshmi Kotha.

Ethics declarations

Competing interests

The authors declare no competing interests.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Kotha, S., White, C. & Berry, P. Optimising End of Life Care for Patients With End Stage Liver Disease: A Review. Curr Hepatology Rep (2024). https://doi.org/10.1007/s11901-024-00650-x

Download citation

  • Accepted:

  • Published:

  • DOI: https://doi.org/10.1007/s11901-024-00650-x

Keywords

Navigation