Evidence-Based Frameworks Increase Engagement in Serious Illness Communication Conversations for Patients With Cirrhosis

Abstract

Background

Serious illness communication occurs with <10% of outpatients with end-stage liver disease (ESLD), despite high morbidity and mortality. We determined the feasibility of assessing changes in readiness for serious illness communication engagement following an evidence-based intervention.

Methods

We conducted a single group pre-post evaluation of a pilot intervention in adults with ESLD in an outpatient hepatology clinic. Study intervention included a standard outpatient hepatology visit with addition of a serious illness conversation performed by one hepatologist trained in evidence-based communication frameworks. Serious illness communication engagement was measured using a validated survey at baseline and over 6 months. Sociodemographic, clinical information, and post-study qualitative data were collected.

Results

31 participants enrolled and 22 participants (70.9%) completed the 6-month assessment. The mean age was 53 years, 42% (n = 13) were female, 55% (n = 17) self-identified as non-White and/or Hispanic ethnicity, 60% (n = 18) had more than a high school education, and 65% (n = 20) were not partnered. SIC readiness improved immediately following the SIC intervention (mean 4.0, SD 1.0, P < 0.001), and was maintained at 3 months (mean 4.0, SD 1.1, P < 0.001) and 6 months (mean 3.8, SD 1.3, P = 0.002). Post-study qualitative data showed participants were comfortable with serious illness communication, desired provider initiation and family involvement with a preference for outpatient conversations with a known provider.

Conclusion

Our hepatologist-led, evidence-based intervention resulted in clinically meaningful and statistically significant increases in serious illness communication readiness for patients with ESLD.

Keywords

end-stage liver disease feasibility pilot communication outpatient advance care planning

Introduction

Background

Despite the high levels of morbidity and mortality associated with end-stage liver disease (ESLD), there are extremely low rates of serious illness communication (SIC), often <10% in outpatient settings.^1–3 ESLD is characterized by an unpredictable disease trajectory that challenges clinicians to provide accurate prognostication and adequately prepare patients and caregivers for potential complications and death.⁴ Prior literature acknowledges provider barriers for initiating these conversations, including a lack of training in end-of-life care, a lack of time, and concern for unrealistic expectations from patients about prognosis.^5,6 Addressing these barriers is essential to provide the required disease trajectory knowledge and prognostication that will allow patients and families to make informed decisions about their current and future care. SIC provides an opportunity to address these limitations for patients with ESLD.

SIC focuses on providing disease knowledge (including appropriate prognostication), eliciting patient values, and aligning potential treatment options or goals of care with patient values.^7,8 Prior data in ESLD suggest that SIC is best delivered by a trusted provider who has a longitudinal relationship with the patient.⁹ This factor makes the outpatient hepatology clinic an ideal setting to initiate SIC conversations. To empower hepatology providers to have SIC, several frameworks have been endorsed by national liver and gastroenterology societies, including Ask-Tell-Ask,¹⁰ REMAP,¹¹ and Best Case Worst Case.¹² These frameworks provide guidance to open these difficult conversations and discuss the prognostic uncertainty that challenges this patient population.

Although the hepatology community understands the importance of SIC for patients with ESLD and is providing increasing support with frameworks and guidance,¹³ there remains a critical need to identify feasible methods for incorporating these conversations into routine clinical practice. Based on this need, we conducted a pilot study to evaluate the use of an evidence-based SIC training (Palliative Care Always-Hepatology [PCA-Hep]) and combined communication frameworks (Ask-Tell-Ask, REMAP, and Best Case Worst Case) to create a communication guide for clinicians of patients with ESLD. Our primary objective was to utilize this structured evidence-based training program and SIC framework and assess the ability to detect changes in readiness and self-efficacy of ESLD patients to engage in SIC conversations. Our secondary objectives were to establish the feasibility of recruiting and longitudinally following patients with ESLD for a SIC intervention. Additionally, we assessed the use of measures for goal-concordant care, previously tested outside of ESLD, for potential use in this patient population. Lastly, we obtained participant and caregiver perspectives of SIC delivery to inform future intervention refinement.

Materials and Methods

Study Design

This is a prospective, 6-month pilot study conducted at a central Texas outpatient hepatology clinic and its affiliated teaching hospital. The University of Texas at Austin Dell Medical School Institutional Review Board and the Ascension Seton Research Enterprise approved this study. All authors had access to the study data and reviewed and approved the final manuscript.

Participants

Potential participants and caregivers were identified using our outpatient hepatology clinic schedule and the weekly inpatient hospital list from December 2023 until May 2024. Inclusion criteria included: 18 years of age or older, diagnosed with decompensated cirrhosis, seen in our outpatient hepatology clinic within 12 months (December 2022 or later) or currently admitted to the inpatient hospital. On eligibility screening, participants had to self-report comprehension of spoken and written English or Spanish, and willingness to obtain care in Digestive Health outpatient hepatology clinic. A feasibility sample of 30 participants was planned. Caregivers were included to allow for assistance in completing surveys, assessment of caregiver burden and to participate in the post-study qualitative interview to provide perspective regarding the SIC intervention.

Exclusion criteria included patients unable to provide informed consent (eg, presence of current, uncontrolled hepatic encephalopathy). Patients without a caregiver were eligible to participate.

Potential participants were contacted in-person or by telephone and provided a description of the study purpose and procedures. Participants and caregivers providing verbal consent were scheduled for an in-person or virtual appointment to review detailed study procedures and to answer any questions. Informed consent was obtained electronically prior to study participation.

Intervention

This study implemented a structured SIC intervention integrated into standard hepatology care for patients with cirrhosis. The intervention was delivered by a single board-certified hepatologist who completed the PCA-Hep training, a 12-week, online, evidence-based program.¹⁴ This comprehensive course focuses on complex communication skills and goals of care conversations to support the delivery of primary palliative care.¹⁴ The skills gained from the PCA-Hep course were combined with the SIC frameworks from the American Association for the Study of Liver Diseases (AASLD) palliative care guidance to create a SIC communication guide for patients with ESLD presenting to outpatient hepatology clinic.

Upon enrollment, all participants were contacted to schedule a standard of care hepatology appointment within one month. During this visit, the hepatologist initiated a SIC conversation beginning with the “Ask-Tell-Ask” framework and asking permission to invite patients into the conversation.¹⁰ If participants consented, the conversation included discussion of liver disease trajectory and prognosis, elicitation of patient values, and—when appropriate—alignment of goals of care or treatment decisions using REMAP framework.

In cases requiring more complex decision-making, the advanced communication model, “Best Case/Worst Case”, was utilized to support patient-centered choices.¹² Each SIC encounter was documented using a standardized clinical note template developed from evidence-based best practices of the necessary components for high-quality SIC documentation.^15,16 This note captured critical information including the participants present during the conversation, identification of a health care power of attorney, presence of an advance directive, and any health care decisions discussed or made.

Additional SIC conversations during the 6-month study period were conducted based on clinical judgment and participant preferences. All further SIC interactions utilized the same frameworks and were documented using the same standardized note format.

Measures

Primary Outcome

The 9-question SIC engagement survey was used as a validated survey to detect changes in SIC readiness and self-efficacy.¹⁷ Questions are measured on a 5-point Likert scale with a 0.2-point change consistent with clinically meaningful change.

Secondary Outcomes

Feasibility was assessed using the goal of participant retention rate ≥70% based on recent pilot trials including patients with cirrhosis reporting retention rates ranging from 60-80%.^18–20 Participants’ perspective of goal concordant care (GCC) was measured by two items. The Heard and Understood item asked, “Over the past 3 months, how much have you felt heard and understood by the doctors, nurses, and clinic staff?” with answers ranging on a 5-point Likert scale from completely to not at all.²¹ From the SUPPORT trial, participants were asked “If you had to make a choice at this time, would you prefer a plan of medical care that focuses on extending life as much as possible, even if it means having more pain and discomfort (Plan A), or would you want a plan of medical care that focuses on relieving pain and discomfort as much as possible, even if that means not living as long? (Plan B)”.²²

Quantitative Measures

Self-Report Survey

Participants completed a REDCap self-report demographic survey including race, ethnicity, gender, marital status, caregiver status, education level, and the single-question literacy screen.²³

Chart-Reviewed Survey

Chart review information including demographics, clinical data, baseline and study period healthcare utilization.

Qualitative Measures

Post Study Semi-structured Interviews

The semi-structured interview guide and codebook was developed a priori by the research team to obtain information about the study experience to inform future modification of the SIC intervention and delivery.

Data Collection

Data was collected from January 2024 to January 2025. Figure 1 shows the quantitative data collected at each timepoint.

Figure 1.

Flow diagram of patient recruitment and data collection

Upon study conclusion, chart reviewed data was collected by researchers, and participants (and available caregivers) were invited to a one-time semi-structured individual interview in-person or virtually to discuss their perspectives on SIC delivery.

Data Analysis

Quantitative Data Analysis

Given the pilot nature of the data, we report descriptive data including demographics and clinical characteristics at baseline. We also provided descriptive data for questionnaires that were administered longitudinally for measuring SIC and GCC. The 9-question SIC engagement survey (including breakdown of readiness and self-efficacy) was submitted to mixed linear models to probe trends around SIC engagement with random intercepts, time centered at baseline.

Qualitative

Qualitative Data Analysis: Codebook Development and Coding

The research team created a preliminary codebook using a deductive approach of a priori codes. The codebook was updated based on recurring themes found from participant responses. Each updated codebook was used to re-analyze and re-code previous transcripts to create a final codebook. Three members of the research team individually coded each transcript using Dedoose software. The research team met on a weekly basis to review coding. To ensure precise coding, all codes were discussed until a consensus was reached. Participant and caregiver themes regarding perspectives of SIC delivery were selected based on qualitative assessments of recurrence of ideas and unique perspectives.

Results

Figure 1 outlines the flow diagram for screening, recruitment, enrollment and data collection. 107 patients met inclusion and exclusion criteria with 31 participants enrolling in baseline assessment, 23 completing the SIC intervention and 22 completing the 6 month follow-up. 17 participants and 5 caregivers completed the post-study qualitative interview. During the study period, there were 5 participants lost to follow-up, 3 participants that died or enrolled in hospice and only 1 participant declined participation after the baseline assessment. Three participants were referred to liver or liver-kidney transplant during the study period and 1 participant successfully underwent liver transplantation during the study period. Two of the 3 participants referred to liver transplantation completed the 6-month assessment but none elected to complete the qualitative interview.

Table 1 shows descriptive demographic and clinical data for the study cohort. The mean age was 53 years, 31% (n = 13) were female, 55% (n = 17) self-identified as either non/White, Hispanic ethnicity or both, 60% (n = 18) had more than a high school education and 65% (n = 20) were not partnered. 30% (n = 9) reported some limitation in health literacy. The predominant etiology of liver disease was alcohol-associated at 58% (n = 18). Hospital utilization included 71% (n = 22) of participants were hospitalized at least once in the prior year to enrollment with 42% (n = 13) having an ICU admission during that time; 30% (n = 9) of participants had an inpatient hospitalization and 13% (n = 4) had a 30-day readmission during the study period.

Table 1.

Demographics and Clinical Data

	Mean (SD)	Frequency n (%), N
Demographics
Female		13 (41.9), 31
Age	53.4 (11.1), 31
Hispanic		12 (38.7), 31
Race
White		22 (71.0), 31
Black		1 (3.2), 31
Other		8 (25.8), 31
Non-white and/or hispanic)		17 (54.8), 31
Insurance
Medicare		6 (19.4), 31
Medicaid		2 (6.5), 31
MAP/uninsured		5 (16.1), 31
Other		20 (64.5), 31
More than high school education		18 (60.0), 30
Marital status: Not partnered		20 (64.5), 31
Clinical characteristics
Single-question literacy screen (sometimes to often = 9)	2.1 (1.3), 30	9 (30), 30
Etiology
MASLD		6 (19.4), 31
Alcohol		18 (58.1), 31
Hepatitis C		8 (25.8), 31
Hepatitis B		1 (3.2), 31
Charlson comorbidity index²⁴	5.0 (1.9), 31
BMI	27.2 (6.0), 31
Karnofsky performance scale²⁵	76.2 (11.2), 31
Liver frailty index²⁶	4.3 (0.68), 15
Complications at baseline
Ascites		23 (74.2), 31
Varices		9 (29.0), 31
Encephalopathy		20 (64.5), 31
Hospital utilization prior 12 months^a
Inpatient hospitalization	1.8 (1.9), 31	22 (71), 31
30-day readmissions	0.48 (1.4), 31	6 (19.4), 31
ICU	0.55 (0.72), 31	13 (41.9),31
Hospital utilization during the study^a
Inpatient hospitalization	0.63 (1.2), 30	9 (30.0), 30
30-day readmissions	0.20 (0.55), 30	4 (13.3), 30
ED visit	0.53 (0.97), 30	9 (30.0), 30

^aOne or more instances of hospitalizations/ED visits.

Abbreviations: MAP – Medical Access Program, BMI – body mass index, MASLD – metabolic-dysfunction associated steatotic liver disease.

Table 2 presents the repeated measure data around SIC and GCC. It demonstrates SIC readiness showed statistically significant increases relative to baseline and these increases were evident immediately following the SIC intervention (P < .001), again at 3-months (P < .001) and 6 months (P = .002). While Table 2 values suggest those gains decreased slightly at 6 months, the drop was not statistically significant relative to 3-month or immediately following SIC intervention. Efficacy for SIC also showed statistically significant improvements relative to baseline and these were also evident immediately after the initial SIC conversation (P = 0.026) and again at 3-months (P = 0.012) but not at 6-months (P = 0.253). Figure 2 shows the line graphs and standard errors for the overall SIC engagement score and both the readiness and self-efficacy scales. 15 participants had 1 SIC discussion during the study period, 6 participants had 2 discussions and 2 participants had 3 discussions.

Table 2.

Descriptive Data for Repeated Measure Data

	SIC overall	SIC readiness	SIC efficacy	Heard & understood	SUPPORT question (Plan-A)
	M (SD), N	M (SD), N	M (SD), N	M (SD), N	n (%), N
Timepoint
Baseline	3.4 (1.1), 31	3.1 (1.3), 31	3.9 (1.1), 30	2.1 (1.1), 29	17 (56.7), 30
Post-SIC	4.2 (0.8), 22	4.0 (1.0), 22	4.5 (0.7), 22
3-mos	4.1 (0.9), 23	4.0 (1.1), 22	4.5 (0.7), 22	2.1 (1.3), 23	12 (52.2), 23
6-mos	3.9 (1.2), 22	3.8 (1.3), 22	4.2 (1.2), 22	2.0 (1.2), 22	9 (40.9), 22

Abbreviations: SIC = serious illness communication.

Figure 2.

Line graph demonstrating clinically meaningful increases in SIC readiness over study period

The qualitative analysis of participant and caregiver perspectives of SIC identified four significant themes. Participants and caregivers expressed comfort and desire to have these discussions, they felt it was the provider’s responsibility to initiate these conversations, they discussed importance of family involvement and they preferred the outpatient setting with a known provider as the optimal environment to facilitate an effective discussion. Each theme is addressed with representative quotes from participants below.

1. Theme – Participants comfortable with serious illness communication. There was overwhelming comfort with SIC discussion with only one participant experiencing fear related to the uncertain disease trajectory. Participants additionally expressed that these conversations were vital to their care.

It did make me feel great, because well, like I said, it's stuff I needed to know and I'm glad that she was there to help me, teach me through it. - ID103

And just the fact that I understand that those are just life things we need to do. And comfortable or not comfortable, for me I’m like, “Suck it up. You have to do it.” – ID 116

So, if me and [the doctor] got together and said, [bro], at some point, this is gonna happen. Let's put a plan together now. Let's do it. I'm ready. Let's talk about it. Tell me what to do. Tell me what is gonna happen so I'll know what to do. -ID 117

…but [the doctor] talking about it, it makes it real and yes, it’s sad at times, but it makes it understandable. And I think it united our family more. . . – ID 101 caregiver

2. Theme – Serious illness communication should be provider initiated. Participants specifically acknowledged the importance of providers initiating SIC and felt that it was the provider responsibility to introduce this conversation to signify its importance in the patient’s care.

I guess maybe the provider would be better, just because they’re more familiar, and as far as it goes, this is my first time going through this, but they’ve seen it before. – ID 119

I think that this discussion, I think if reality says there needs to be a discussion and it actually is ya’ll’s responsibility to let us know a discussion needs to happen. – ID 101 caregiver

3. Theme – The importance of family involvement. Many participants expressed a desire to remove burden from their family and loved ones by discussing their wishes explicitly and involving them early in the process.

It was just a harsh reality, but I’ve always had a plan in the back of my head, because I don’t want anybody having to make those decisions, and putting that burden on somebody else. So it’s something that I had emotionally prepared for way before even liver disease, in the worst case scenarios, but I’m glad that I’m ironing out the details. -ID102

No. I think to be prepared is the best way because I don’t wanna wait till the last minute. . .Or to put that weight on everybody. If there’s something I can do about it to ease the pain, I want to be able to carry as much of that as possible. – ID 117

So, I guess the answer is, I think anybody after 60 should have some discussion [SIC] with physician, doctor, family; at least to have an idea. So the family is not left going, “Oh, shit. What do I do now?” – ID 110

4. Theme – Ideal setting is outpatient with a known provider. All but one participant preferred to have SIC conversations with their outpatient provider. The majority of participants preferred to have SIC conversations as early in the disease trajectory as possible and two participants discussed the importance of SIC being iterative.

It's very unpredictable, but I do think that it was helpful to do it not when you’re in the hospital.- ID 116

I would like to talk to and have a conversation when I’m still okay and I’m not on the deathbed. – ID 121

I mean, you got to revisit that kind of stuff. – ID 110

Discussion

Despite the feasibility-focused small sample size, our structured, evidence-based SIC intervention produced statistically significant increases in SIC readiness and self-efficacy immediately following the intervention and at 3 months when compared to baseline. These increases were consistent with clinically meaningful SIC engagement.¹⁷ The improvement was sustained for the 6-month study period for SIC readiness, suggesting a lasting impact of the initial conversation on readiness, but were not statistically significant at 6 months for self-efficacy. These findings were consistent with prior SIC interventions in other chronic illness populations^24,25 and expand on the limited outpatient interventions to improve SIC in patients with liver disease.^1,2 The results demonstrate that even a single, framework-guided SIC encounter can enhance patient engagement and preparedness for SIC in ESLD. Yet the lack of sustained improvement in self-efficacy suggests that SIC requires ongoing conversations to maintain patient confidence in aligning current medical treatments and values. Therefore future work to increase patients’ readiness and self-efficacy to initiate SIC conversations with healthcare providers and medical decision makers will likely need to focus on maintaining this dialogue over the course of progressive illness to achieve its maximal benefit.

This pilot study demonstrated feasibility to recruit and retain a cohort of ESLD patients for a SIC intervention over a 6-month period (71%, N = 22). The overwhelming majority of the loss to follow-up was explained by liver disease severity, including death and hospice enrollment, or social challenges, such as being unstably housed. Only one participant voluntarily withdrew participation after enrollment. Additionally, 74% of participants completed our SIC intervention during their standard of care hepatology visit demonstrating feasibility of our intervention delivery.

Goal concordant care is an important outcome in determining the effectiveness of SIC interventions. In our study, the GCC measures were obtained at > 90% at baseline and 74% at 3 months. These values for GCC encourage collection of this information in future studies to better understand whether the care being provided is consistent with patients’ values. Additionally, a novel GCC measure is being tested in ESLD patients and may be a valuable tool in future studies.²⁶

The post-study qualitative findings of the participants and caregivers overwhelming found the SIC conversations as helpful and clarifying. Several participants noted that the discussions initiated follow-up conversations with family or prompted completion of SIC documentation. These insights are consistent with prior studies supporting patient acceptability of SIC and emphasizing the importance of delivery by a trusted, longitudinal care provider.^9,27,28 Participants and caregivers had difficulties providing specific information to refine the intervention and future work will provide more detailed questioning and prompts to better understand the patient needs in this population to empower SIC engagement.

Limitations

This study has some limitations. First, patients were from one clinic in one part of the country, limiting generalizability. Second, we had a small sample size; however, the direction of change was statistically and clinically meaningful in increasing SIC engagement. Third, the lack of randomization and reliance on within-person change over repeated interactions may have introduced social desirability bias coupled with selection and confounding bias. Forth, all SIC conversations were conducted by a single hepatologist with specialized training in primary palliative care communication with 30-minutes of additional time allotted for the initial SIC encounter. While this ensured commitment to the intervention, it may limit applicability to broader hepatology settings where provider training, comfort and time constraints may impact variability in SIC delivery. It is important to note that the 30-minute time allotted for SIC is billable in addition to standard hepatology care.

Overall, our findings provide an important foundation for future work. The success of a structured SIC model—delivered by a hepatologist and integrated into usual care—suggests a feasible, patient-centered strategy to improve SIC and shared decision-making for patients with ESLD. The next steps for this work include a randomized controlled trial with training of multiple providers caring for patients with ESLD powered to determine the efficacy of our intervention in a real world setting and evaluating its impact on patient and caregiver quality of life, goal-concordant care, and healthcare utilization. In a larger sample with diverse providers delivering the intervention, we will learn the potential to implement this intervention in broad clinical settings caring for patients with ESLD.

Conclusion

This pilot study demonstrated that structured SIC is both feasible and well-received by patients with ESLD in the outpatient setting. We observed clinically meaningful improvements in SIC readiness. Our findings support future work to effectively implement evidence-based strategies for SIC into routine hepatology care.

Footnotes

ORCID iDs

Cristal Brown

Nazan Aksan

Ethical Considerations

This study was performed in line with the principles of the Declaration of Helsinki. The University of Texas at Austin Dell Medical School Institutional Review Board and the Ascension Seton Research Enterprise approved this study.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Dr Cristal Brown is funded by the National Institutes of Health under Award Number 1 K12 TR004529-01 and by the Cambia Health Foundation through the Sojourns Scholar Leadership Program. Dr Rebecca Sudore is funded in part by the National Institute on Aging, National Institutes of Health (K24AG054415). Funding institutions had no role in the research design, data collection, analysis, or writing of the manuscript. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Declaration of Conflicting Interests

The authors have no conflicts of interest related to the material presented in this manuscript.

Data Availability Statement

The data that support the findings of this study are not openly available due to reasons of sensitivity and are available from the corresponding author upon reasonable request. Data are located in a controlled access data storage at the University of Texas at Austin.*

Clinical Trial Registration

N/A due to feasibility trial.

Appendix

References

Patel

Kogekar

Agarwal

, et al. Improving advance care planning in outpatients with decompensated cirrhosis: a pilot study. J Pain Symptom Manag. 2020;59:864-870.

Patel

Bowman

Prause

, et al. Outcomes of a 3-Year quality improvement study to improve advance care planning in patients with decompensated cirrhosis. Am J Gastroenterol. 2023;119:580-583.

Najafian

Sack

DeLisle

Jakab

. Advance care planning for patients with cirrhosis in a structured inpatient/outpatient hepatology program. J Palliat Med. 2019;22:1445-1448.

Arney

Gray

Clark

, et al. Prognosis conversations in advanced liver disease: a qualitative interview study with health professionals and patients. PLoS One. 2022;17:e0263874.

Ufere

Donlan

Waldman

, 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.

Low

Vickerstaff

Davis

, et al. Palliative care for cirrhosis: a UK survey of health professionals’ perceptions, current practice and future needs. Frontline Gastroenterol. 2016;7:4-9.

Kaplan

Ladin

Junna

Lindenberger

Ufere

. Serious illness communication in cirrhosis care: tools to improve illness understanding, prognostic understanding, and care planning. Gastro Hep Adv. 2024;3:634-645.

Brown

Khan

Parekh

Muir

Sudore

. Barriers and strategies to effective serious illness communication for patients with end-stage liver disease in the intensive care setting. J Intensive Care Med. 2024;41:8850666241280892.

Carbonneau

Davyduke

Spiers

Brisebois

Ismond

Tandon

. Patient views on advance care planning in cirrhosis: a qualitative analysis. Canadian Journal of Gastroenterology and Hepatology. 2018;2018:1-8.

10.

Back

Arnold

Baile

Tulsky

Fryer-Edwards

. Approaching difficult communication tasks in oncology. CA Cancer J Clin. 2005;55:164-177.

11.

Childers

Back

Tulsky

Arnold

. REMAP: a framework for goals of care conversations. J Oncol Pract. 2017;13(10):e844-50. https://doi.org/10.1200/JOP.2016.018796

12.

Ufere

El-Jawahri

Ritchie

Lai

Schwarze

. Promoting prognostic understanding and health equity for patients with advanced liver disease: using “Best Case/Worst Case”. Gastroenterology. 2023;164:171-176.

13.

Rogal

Hansen

Patel

, et al. AASLD practice guidance: palliative care and symptom‐based management in decompensated cirrhosis. Hepatology. 2022;76:819-853.

14.

DeNofrio

Verma

Kosinski

, et al. Palliative care always: hepatology-virtual primary palliative care training for hepatologists. Hepatol Commun. 2022;6:920-930.

15.

Bernacki

Block

American College of Physicians High Value Care Task Force . American college of physicians high value care task F. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med. 2014;174:1994-2003.

16.

Schlichte

Setji

Walter

, et al. The use of templates for documenting advance care planning conversations: a descriptive analysis. J Pain Symptom Manag. 2023;66:123-136.

17.

Sudore

Heyland

Barnes

, et al. Measuring advance care planning: optimizing the advance care planning engagement survey. J Pain Symptom Manag. 2017;53:669-681.e8.

18.

Hansen

Leo

Chang

Zucker

Sasaki

. Pain and self-care behaviours in adult patients with end-stage liver disease: a longitudinal description. J Palliat Care. 2014;30:32-40.

19.

Singh

Aggrawal

Singh

Charak

Bhagat

. Safety and efficacy of dapagliflozin in recurrent ascites: a pilot study. Dig Dis Sci. 2025;70:835-842.

20.

Mohta

Anand

Sharma

, et al. Randomised clinical trial: effect of adding branched chain amino acids to exercise and standard-of-care on muscle mass in cirrhotic patients with sarcopenia. Hepatol Int. 2022;16:680-690.

21.

Gramling

Stanek

Ladwig

, et al. Feeling heard and understood: a patient-reported quality measure for the inpatient palliative care setting. J Pain Symptom Manag. 2016;51:150-154.

22.

A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT principal investigators. JAMA. 1995;274:1591-1598.

23.

Morris

Maclean

Chew

Littenberg

. The single item literacy screener: evaluation of a brief instrument to identify limited reading ability. BMC Fam Pract. 2006;7:21.

24.

Lange

Feser

Hess

Barón

Bekelman

. Serious illness communication in a randomized trial of a nurse and social worker palliative telecare team. J Am Geriatr Soc. 2025;73(7):2181-2187.

25.

Thamcharoen

Nissaisorakarn

Cohen

, et al. Serious illness conversations in advanced kidney disease: a mixed-methods implementation study. BMJ Support Palliat Care. 2021;14:e928-935.

26.

Verma

Reeve

Jakab

, et al. Psychometric properties of a novel tool to measure goal concordant care (GCC) from patients with end stage liver disease, and their caregivers. The Liver Meeting. San Diego, California: American Association for the Study of Liver Diseases; 2024.

27.

Donlan

Kaplan

Noll

, et al. Prognostic communication, symptom burden, psychological distress, and quality of life among patients with decompensated cirrhosis. Clin Gastroenterol Hepatol. 2024;23(10):1746-1754.

28.

Wang

Lebsack

Sudore

Lai

. Low rates of advance care planning (ACP) discussions despite readiness to engage in ACP among liver transplant candidates. Dig Dis Sci. 2021;66:1446-1451.