Abstract
Background
Patients with end-stage liver disease awaiting liver transplantation (LT) are seriously ill and experience fluctuating periods of clinical decompensation. Discussion of a patient’s advance care planning (ACP) wishes early in their dynamic disease course is critical to providing value-aligned care while awaiting LT. We aimed to evaluate current ACP documentation and assess readiness to engage in ACP in this population.
Methods
We conducted a retrospective study of adults undergoing LT evaluation from January 2017 to June 2017 and assessed characteristics associated with documentation using logistic regression. We then administered a survey to LT candidates from March 2018 to May 2018 to determine self-reported readiness to engage in ACP (range 1 = not at all ready to 5 = very ready).
Results
Among 170 LT candidates, median (interquartile range) age was 58 (53–65), 65% were men, MELDNa was 15 (11–21), and Child–Pugh A/B/C were 33/38/29%. Nine percent reported completing ACP prior to LT evaluation, but 0% had legal ACP forms or end-of-life wishes documented in the medical record. A durable power of attorney (DPOA) was discussed with 10%. In univariable analysis, white race (OR 4.16, p = 0.03) and female sex (OR 3.06, p = 0.04) were associated with ACP documentation, but Child–Pugh score and MELDNa were not. Of the 41 LT candidates who completed the ACP survey, 93% were ready to appoint a DPOA and 85% were ready to discuss end-of-life care.
Conclusion
There is a paucity of ACP documentation and identification of DPOA among LT candidates, despite patients reporting readiness to complete ACP and appoint a DPOA. These results reveal an opportunity for tools to facilitate discussions around ACP between clinicians, patients, and their caregivers.
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Abbreviations
- ACP:
-
Advance care planning
- CI:
-
Confidence interval
- DNR:
-
Do-not-resuscitate
- DPOA:
-
Designated power of attorney
- ESLD:
-
End-stage liver disease
- HBV:
-
Hepatitis B virus
- HCV:
-
Hepatitis C virus
- IQR:
-
Interquartile range
- MELDNa:
-
Model for end-stage liver disease-sodium
- NASH:
-
Nonalcoholic steatohepatitis
- POLST:
-
Provider Orders for Life-Sustaining Treatment
- SD:
-
Standard deviation
References
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;44:217–231.
Scaglione SJ, Metcalfe L, Kliethermes S, 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;51:839–844.
Peng JK, 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;33:24–36.
Garcia-Tsao G, Friedman S, Iredale J, Pinzani M. Now there are many (stages) where before there was one: in search of a pathophysiological classification of cirrhosis. Hepatology. 2010;51:1445–1449.
Based on OPTN data as of September 1, 2019.
Larson AM, Curtis JR. Integrating palliative care for liver transplant candidates: “too well for transplant, too sick for life”. JAMA. 2006;295:2168–2176.
Sudore RL, Lum HD, You JJ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manag. 2017;53:821e821–832e821.
Rietjens JAC, Sudore RL, Connolly M, et al. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol. 2017;18:e543–e551.
Sudore RL, Schickedanz AD, Landefeld CS, et al. Engagement in multiple steps of the advance care planning process: a descriptive study of diverse older adults. J Am Geriatr Soc. 2008;56:1006–1013.
Fried TR, Redding CA, Robbins ML, Paiva A, O’Leary JR, Iannone L. Stages of change for the component behaviors of advance care planning. J Am Geriatr Soc. 2010;58:2329–2336.
Sudore RL, Stewart AL, Knight SJ, et al. Development and validation of a questionnaire to detect behavior change in multiple advance care planning behaviors. PLoS ONE. 2013;8:e72465.
Sudore RL, Heyland DK, Barnes DE, et al. Measuring advance care planning: optimizing the advance care planning engagement survey. J Pain Symptom Manag. 2017;53:669e668–681e668.
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;12:692–698.
Wachter RM, Luce JM, Hearst N, Lo B. Decisions about resuscitation: inequities among patients with different diseases but similar prognoses. Ann Intern Med. 1989;111:525–532.
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;67:2025–2040.
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.
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;19:836–841.
Rakoski MO, Volk ML. Palliative care for patients with end-stage liver disease: an overview. Clin Liver Dis (Hoboken). 2015;6:19–21.
Ufere NN, Donlan J, Waldman L, et al. Physicians’ perspectives on palliative care for patients with end-stage liver disease: a national survey study. Liver Transpl. 2019;25:859–869.
Ufere NN, Donlan J, Waldman L, et al. Barriers to use of palliative care and advance care planning discussions for patients with end-stage liver disease. Clin Gastroenterol Hepatol. 2019;17:2592–2599.
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;22:1445–1448.
Harrison KL, Adrion ER, Ritchie CS, Sudore RL, Smith AK. Low completion and disparities in advance care planning activities among older medicare beneficiaries. JAMA Intern Med. 2016;176:1872–1875.
Clark MA, Person SD, Gosline A, Gawande AA, Block SD. Racial and ethnic differences in advance care planning: results of a statewide population-based survey. J Palliat Med. 2018;21:1078–1085.
Funding
This study was funded by K23AG048337 (Lai) and R01AG059183 (Lai). This funding agency played no role in the analysis of the data or preparation of this manuscript.
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CWW and JCL contributed to study concept and design. CWW and AL participated in data collection; all authors contributed to data analysis and interpretation. CWW, RLS, and JCL contributed to the drafting of the manuscript; all authors contributed to critical revision of the manuscript and approved the final version.
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Wang, C.W., Lebsack, A., Sudore, R.L. et al. Low Rates of Advance Care Planning (ACP) Discussions Despite Readiness to Engage in ACP Among Liver Transplant Candidates. Dig Dis Sci 66, 1446–1451 (2021). https://doi.org/10.1007/s10620-020-06369-1
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DOI: https://doi.org/10.1007/s10620-020-06369-1