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Advance Care Planning and Goals of Care Discussions in Advanced Liver Disease

  • Palliative Care (A Patel, Section Editor)
  • Published:
Current Hepatology Reports Aims and scope Submit manuscript


Purpose of Review

Advance care planning (ACP) has been shown to improve multiple outcomes in patients with serious illnesses; however, patients with advanced liver disease, or cirrhosis, rarely receive timely ACP. The purpose of this review is to evaluate the current state of ACP for patients with advanced liver disease and to provide practical guidance for integrating early ACP into routine outpatient hepatology care.

Recent Findings

Due to multiple patient-, physician-, and systems-level barriers, patients with advanced liver disease have low rates of timely ACP engagement. Early identification and preparation of a surrogate decision-maker, enhancing clinician ACP communication skills, use of patient-centered educational tools, optimizing outpatient processes for ACP documentation, and early referral to specialty palliative care may help to improve current deficits in ACP for this population.


Provision of early ACP to patients with advanced liver disease may better ensure that patients receive medical care that is consistent with their goals and values.

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Advance care planning


Cardiopulmonary resuscitation


Goals of care


Intensive care unit


Model for End-Stage Liver Disease


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

  1. Heron M. Deaths: Leading Causes for 2017. Natl Vital Stat Rep. 2019;68(6):1–77.

    PubMed  Google Scholar 

  2. Scaglione S, Kliethermes S, Cao G, Shoham D, Durazo R, Luke A, et al. The epidemiology of cirrhosis in the United States: a population-based study. J Clin Gastroenterol. 2015;49(8):690–6.

    Article  PubMed  Google Scholar 

  3. 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  Google Scholar 

  4. Goldberg DS, French B, Sahota G, Wallace AE, Lewis JD, Halpern SD. Use of population-based data to demonstrate how waitlist-based metrics overestimate geographic disparities in access to liver transplant care. Am J Transplant. 2016;16(10):2903–11.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  5. Scaglione SJ, Metcalfe L, Kliethermes S, Vasilyev I, Tsang R, Caines A, et al. Early hospital readmissions and mortality in patients with decompensated cirrhosis enrolled in a large national health insurance administrative database. J Clin Gastroenterol. 2017;51(9):839–44.

    Article  PubMed  Google Scholar 

  6. Sudore RL, Lum HD, You JJ, Hanson LC, Meier DE, Pantilat SZ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary delphi panel. J Pain Symptom Manag. 2017;53(5):821–32.e1.

    Article  Google Scholar 

  7. McMahan RD, Tellez I, Sudore RL. Deconstructing the advance care planning for adults: a consensus definition from a multidisciplinary delphi panel? A scoping review. J Am Geriatr Soc. 2020;69:234–44.

    Article  PubMed  Google Scholar 

  8. Altaii H, Al-Kindi SG, Yaqoob Z, Al-Khazaraji A, Romero-Marrero C. Place of death and hospice utilization among patients who die from cirrhosis in the United States. Clin Gastroenterol Hepatol. 2018;16(1):142–3.

    Article  PubMed  Google Scholar 

  9. Peng JK, Higginson IJ, Gao W. Place of death and factors associated with hospital death in patients who have died from liver disease in England: a national population-based study. Lancet Gastroenterol Hepatol. 2019;4(1):52–62.

    Article  PubMed  Google Scholar 

  10. Hudson B, Round J, Georgeson B, Pring A, Forbes K, McCune CA, et al. Cirrhosis with ascites in the last year of life: a nationwide analysis of factors shaping costs, health-care use, and place of death in England. Lancet Gastroenterol Hepatol. 2018;3(2):95–103.

    Article  PubMed  Google Scholar 

  11. Sanoff HK, Chang Y, Reimers M, Lund JL. Hospice utilization and its effect on acute care needs at the end of life in medicare beneficiaries with hepatocellular carcinoma. J Oncol Pract. 2017;13(3):e197–206.

    Article  PubMed  Google Scholar 

  12. Kelly EM, James PD, Murthy S, Antonova L, Wong F, Shaw-Stiffel T, et al. Health care utilization and costs for patients with end-stage liver disease are significantly higher at the end of life compared to those of other decedents. Clin Gastroenterol Hepatol. 2019;17(11):2339–46.e1.

    Article  PubMed  Google Scholar 

  13. Kaplan A, Fortune B, Ufere N, Brown RS, Rosenblatt R. National trends in location of death in patients with end-stage liver disease. Liver Transpl. 2020;27:165–76.

    Article  Google Scholar 

  14. Poonja Z, Brisebois A, van Zanten SV, Tandon P, Meeberg G, Karvellas CJ. Patients with cirrhosis and denied liver transplants rarely receive adequate palliative care or appropriate management. Clin Gastroenterol Hepatol. 2014;12(4):692–8.

    Article  PubMed  Google Scholar 

  15. 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 

  16. Ufere NN, Halford JL, Caldwell J, Jang MY, Bhatt S, Donlan J, et al. Health care utilization and end-of-life care outcomes for patients with decompensated cirrhosis based on transplant candidacy. J Pain Symptom Manag. 2019;59:590–8.

    Article  Google Scholar 

  17. Ufere NN, Brahmania M, Sey M, Teriaky A, El-Jawahri A, Walley KR, et al. Outcomes of in-hospital cardiopulmonary resuscitation for patients with end-stage liver disease. Liver Int. 2019;39(7):1256–62.

    Article  PubMed  Google Scholar 

  18. •• Roth K, Lynn J, Zhong Z, Borum M, Dawson N. Dying with end stage liver disease with cirrhosis: insights from SUPPORT. J Am Geriatr Soc. 2000;48(S1):S122–S30. large, multicenter prospective study examined patterns of care and end-of-life care preferences of patients with advanced liver disease.

    Article  CAS  PubMed  Google Scholar 

  19. • 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. 2019. prospective study of patients with advanced liver disease was the first study to look at knowledge, undestanding, and completion of ACP in this population.

  20. • 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. 2020. retrospective study showed low rates of ACP documentation among liver transplant candidates despite their self-reported readiness to engage in ACP, discuss end-of-life care, and appoint a durable power of attorney.

  21. 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 (Millwood). 2017;36(7):1244–51.

    Article  Google Scholar 

  22. Najafian N, Sack JS, DeLisle AM, Jakab S. Advance care planning for patients with cirrhosis in a structured inpatient/outpatient hepatology program. J Palliat Med. 2019;22:1445–8.

    Article  PubMed  Google Scholar 

  23. •• 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. national survey study of hepatology providers reported patient-, physician-, and systems-level barriers to early ACP discussions for patients with advanced liver disease.

    Article  PubMed  PubMed Central  Google Scholar 

  24. •• Patel AA, Ryan GW, Tisnado D, Chuang E, Walling AM, Saab S, et al. Deficits in advance care planning for patients with decompensated cirrhosis at liver transplant centers. JAMA Intern Med. 2021;181(5):652–60. multisite qualitative interview study described the experiences of ACP reported by patients with advanced liver disease and transplant clinicians at liver transplant centers.

    Article  PubMed  Google Scholar 

  25. 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. 2018:4040518.

  26. 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 

  27. 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).

  28. Valery PC, Clark PJ, McPhail SM, Rahman T, Hayward K, Martin J, et al. Exploratory study into the unmet supportive needs of people diagnosed with cirrhosis in Queensland. Australia Intern Med J. 2017;47(4):429–35.

    Article  PubMed  Google Scholar 

  29. Hansen L, Press N, Rosenkranz SJ, Baggs JG, Kendall J, Kerber A, et al. Life-sustaining treatment decisions in the ICU for patients with ESLD: a prospective investigation. Res Nurs Health. 2012;35(5):518–32.

    Article  PubMed  PubMed Central  Google Scholar 

  30. Low JTS, 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;69:1260–73.

    Article  PubMed  Google Scholar 

  31. 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  Google Scholar 

  32. 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. 2020.

  33. Semer NB. Awaiting Liver Transplantation. Transplantation. 2015;99(7):e48.

    Article  PubMed  Google Scholar 

  34. Ufere NN, Donlan J, Waldman L, Patel A, Dienstag JL, Friedman LS, et al. Physicians’ perspectives on palliative care for patients with end-stage liver disease: a national survey study. Liver Transpl. 2019;25(6):859–69.

    Article  PubMed  PubMed Central  Google Scholar 

  35. Low J, Vickerstaff V, Davis S, Bichard J, Greenslade L, Hopkins K, et al. Palliative care for cirrhosis: a UK survey of health professionals’ perceptions, current practice and future needs. Frontline Gastroenterol. 2016;7(1):4–9.

    Article  PubMed  Google Scholar 

  36. 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 

  37. •• Tandon P, Walling A, Patton H, Taddei T. AGA clinical practice update on palliative care management in cirrhosis: expert review. Clin Gastroenterol Hepatol. 2021;19(4):646–56.e3. Clinical Practice Guidance provides ten evidence-based best practice advice statements regarding the integration of palliative care into cirrhosis care.

    Article  PubMed  Google Scholar 

  38. Comer AR, Hickman SE, Slaven JE, Monahan PO, Sachs GA, Wocial LD, et al. Assessment of discordance between surrogate care goals and medical treatment provided to older adults with serious illness. JAMA Netw Open. 2020;3(5):e205179-e.

    Article  Google Scholar 

  39. Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med. 2006;166(5):493–7.

    Article  PubMed  Google Scholar 

  40. Ehrman SE, Norton KP, Karol DE, Weaver MS, Lockwood B, Latimer A, et al. Top ten tips palliative care clinicians should know about medical decision-making capacity assessment. J Palliat Med. 2021;24:599–604.

    Article  PubMed  Google Scholar 

  41. •• Brisebois A, Ismond KP, Carbonneau M, Kowalczewski J, Tandon P. Advance care planning (ACP) for specialists managing cirrhosis: a focus on patient-centered care. Hepatology. 2018;67(5):2025–40. article provides a comprehensive overview of approaching ACP in the outpatient setting for patients with advanced liver disease, with a focus on the use of patient educational tools, visual aids, and communication guides for clinical practice.

    Article  PubMed  Google Scholar 

  42. Bernacki RE, Block SD, Force ACoPHVCT. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med 2014;174(12):1994-2003.

  43. Childers JW, Back AL, Tulsky JA, Arnold RM. REMAP: A framework for goals of care conversations. J Oncol Pract. 2017;13(10):e844–e50.

    Article  PubMed  Google Scholar 

  44. 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 

  45. 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(4):302–11.

    Article  CAS  PubMed  Google Scholar 

  46. Sudore RL, Knight SJ, McMahan RD, Feuz M, Farrell D, Miao Y, et al. A novel website to prepare diverse older adults for decision making and advance care planning: a pilot study. J Pain Symptom Manag. 2014;47(4):674–86.

    Article  Google Scholar 

  47. Brandes K, Linn AJ, Butow PN, van Weert JC. The characteristics and effectiveness of Question Prompt List interventions in oncology: a systematic review of the literature. Psychooncology. 2015;24(3):245–52.

    Article  PubMed  Google Scholar 

  48. Low JTS, Davis S, Greenslade L, Carroll C, Craig R, Wilson J, et al. Improving communication in outpatient consultations in people with cirrhosis: the development of a question prompt list (QPL). J Clin Gastroenterol. 2020;54:898–904.

    Article  PubMed  PubMed Central  Google Scholar 

  49. Kruser JM, Taylor LJ, Campbell TC, Zelenski A, Johnson SK, Nabozny MJ, et al. “Best case/worst case”: training surgeons to use a novel communication tool for high-risk acute surgical problems. J Pain Symptom Manag. 2017;53(4):711–9.e5.

    Article  Google Scholar 

  50. Zimmermann CJ, Jhagroo RA, Wakeen M, Schueller K, Zelenski A, Tucholka JL, et al. Opportunities to improve shared decision making in dialysis decisions for older adults with life-limiting kidney disease: a pilot study. J Palliat Med. 2020;23(5):627–34.

    Article  PubMed  PubMed Central  Google Scholar 

  51. •• Patel A, Kogekar N, Agarwal R, Cohen C, Esteban JP, Pourmand K, et al. Improving advance care planning in outpatients with decompensated cirrhosis: a pilot study. J Pain Symptom Manag. 2020;59(4):864–70. quality improvement study used a multicomponent intervention that included physician education on ACP and use of an ACP note template in the electronic health record to improve rates of ACP documentation for patients with advanced liver disease.

    Article  Google Scholar 

  52. Jones CA, Acevedo J, Bull J, Kamal AH. Top 10 tips for using advance care planning codes in palliative medicine and beyond. J Palliat Med. 2016;19(12):1249–53.

    Article  PubMed  PubMed Central  Google Scholar 

  53. 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 Symptom Manag. 2015;50(6):882–6 e2.

    Article  Google Scholar 

  54. Quill TE, Abernethy AP. Generalist plus specialist palliative care—creating a more sustainable model. N Engl J Med. 2013;368(13):1173–5.

    Article  CAS  PubMed  Google Scholar 

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Correspondence to Nneka N. Ufere.

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Ufere, N.N. Advance Care Planning and Goals of Care Discussions in Advanced Liver Disease. Curr Hepatology Rep 20, 77–84 (2021).

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