Integrated Model for Patient-Centered Advanced Liver Disease Care

Abstract

Advanced liver disease (AdvLD) is a high-risk common condition with a progressive, highly morbid, and often fatal course. Despite effective treatments, there are substantial shortfalls in access to and use of evidence-based supportive and palliative care for AdvLD. Although patient-centered, chronic illness models that integrate early supportive and palliative care with curative treatments hold promise, there are several knowledge gaps that hinder development of an integrated model for AdvLD. We review these evidence gaps. We also describe a conceptual framework for a patient-centered approach that explicates key elements needed to improve integrated care. An integrated model of AdvLD would allow clinicians, patients, and caregivers to work collaboratively to identify treatments and other healthcare that best align with patients’ priorities.

Advanced liver disease (AdvLD), defined as cirrhosis of any cause with 1 or more liver-related complications, is a high-risk common condition with a progressive, highly morbid, and often fatal course. The prevalence of AdvLD has doubled from 2001 to 2013, and is expected to increase further.^1,2 AdvLD predisposes to a range of complications including ascites, hepatic encephalopathy, variceal bleeding, and hepatocellular cancer (HCC). Complications occur at an annual rate of approximately 10%.³ Half of patients die within 2 years of developing complications; however mortality ranges from 20% to 70%–80% in different studies—highlighting the variability in prognosis.³ AdvLD is also resource intensive; many complications require hospital admission⁴ and nearly 70% experience readmission at a cost >$20,000 per admission.⁵ The burden of AdvLD is amplified by its dramatic impact on patients’ health-related quality of life (HRQOL) resulting from multiple physical, psychological, and social stressors.^6,7

Antiviral treatments and liver transplantation hold promise for arresting progress of liver disease and even have curative potential.^8,9 For patients with AdvLD, liver transplantation is a valid option, but is received by only a small subset of patients.^10,11 All patients, even those who are considered for transplant, can benefit from supportive care therapies and chronic care, which can reduce morbidity and mortality associated with AdvLD.^12,13 Palliative care referrals may reduce procedure burden and cost of terminal hospitalizations.¹⁴ Surveillance of cirrhosis increases detection of early stage HCC and prolongs survival among selected patients.¹⁵ Evidence based therapies can reduce the risk of variceal bleeding, complications of encephalopathy, and frequent hospitalizations.^16,17 Psychological care can encourage alcohol abstinence and reduce complications.¹⁸

Despite effective treatments, there are substantial shortfalls in access to and use of evidence-based supportive and palliative care for AdvLD. Fewer than a third of AdvLD patients receive all recommended supportive and palliative care (ie, preventive or symptomatic treatments of AdvLD complications, managing coexisting pain or depression, and advance directives).^19,20 Other studies show significant underuse of end-of-life comfort-oriented care (comfort care and hospice decisions). For example, among 102 consecutive patients with severe AdvLD (median survival 52 days), only 11% had received referral to palliative care.²¹ Unfortunately, curative, supportive and palliative, and end-of-life comfort care approaches often conflict rather than reinforce one another in routine practice. A study of almost 500 AdvLD patients found that patients considered for transplant received lower-quality end-of-life care than did patients not considered for transplantation, with major deficits in communication (including advance directives and hospice decisions) and symptom management.²²

Patient-centered, chronic illness models that integrate early supportive and palliative care with life-prolonging treatments are becoming increasingly common in cancer. Palliative care is an approach that focuses on quality of life of patients and their families through the prevention, assessment and relief of suffering, pain, and other problems using symptom management, psychosocial care, communication, complex decision making, and transitions of care. Supportive care is a term now commonly used to encourage earlier referrals due to the misperception that palliative care is relevant only at the end of life.^23,24 In a study by Temel et al,²⁵ early supportive and palliative care (integrated with oncology care) of patients with advanced lung cancer led to prolonged survival with improvements in HRQOL and mood compared with patients receiving standard care.²⁶ These beneficial effects may have stemmed in part from improvements in patients’ coping strategies and understanding of their prognosis, which influenced their decisions to opt for palliative rather than curative care.²⁵ Qualitative data from this study suggest that early palliative care facilitated broader communication between patients and clinicians.²⁷ These and other emerging data^28,29 provide compelling evidence for integrating supportive and palliative with curative care earlier in the course of a serious illness, in which morbidity can be attenuated, mortality forestalled, and HRQOL preserved, even at late stages of disease.³⁰ Models of AdvLD care that integrate early supportive and palliative care with curative care can potentially improve patient outcomes. As of yet, there are only a few similar efforts in AdvLD. None rely on patients’ preferences to align treatments to their health priorities across the full course of a chronic illness.

We describe a conceptual framework for an integrated patient-centered approach to AdvLD care derived from a review of literature. This framework structures a model of AdvLD care delivery based on patients’ priorities related to their clinical management,³¹ and supports a shared mental model of the importance of early integration of palliative care principles in the care of patients with AdvLD.³² Patients’ health priorities include their desired curative as well as supportive and palliative outcomes (ie, health outcome goals) and what patients will or will not do to achieve those goals (ie, care preferences).³³ Moreover, patients’ priorities and preferences are grounded in their illness experiences as they contend with advancing disease. We believe that an integrated model of AdvLD would allow clinicians, patients, and caregivers to work collaboratively to identify treatments and other health care that best align with patients’ priorities and may be more effective in improving patient-centered health outcomes than would one-size-fits-all approaches. We conclude with recommendation on how to develop this integrated model of AdvLD care.

Management of AdvLD: Need for Collaborative Treatment Planning Guided by Patient Priorities

Contemporary thinking on how best to manage chronic, serious illness is often informed by the chronic care model,³⁴ which guides our own model, particularly in identifying shortcomings in patient-centered approaches in AdvLD. The chronic care model, tailored to AdvLD, is presented in Figure 1. A patient-centered approach to any chronic illness includes the following essential elements: informed and involved patients and caregivers, receptive and responsive clinicians, and a health care environment that supports the collaborative efforts of patients, caregivers, and their clinicians. A central tenet of patient-centered chronic illness care is the availability of reliable information about prognosis and the availability of suitable, evidence-based therapies. Indeed, providing patients and their families with information about a condition, its prognosis, and available therapies is an integral component of the Institute of Medicine’s blueprint for patient-centered care in cancer. The bold arrows in Figure 1 show the relationships between these components. Starting on the left, prognostic and therapeutic data contribute to informed patients and caregivers by clarifying the likely course of disease and the available options. Better understanding of prognosis and his or her likelihood of receiving transplant (curative care) nudges patients and family members from precontemplation toward contemplation and preparation in regards to their expectations about the future, likelihood for complications, and self-management needed for AdvLD care. By envisioning the 2 realities (their prognosis and chance of curative liver transplantation), patients are more prepared to prioritize their goals of care across the disease spectrum and frame their preferences for curative and supportive and palliative care.²⁵ For example, patients who have a high probability of becoming a transplant recipient may choose aggressive treatments (transplant evaluation). Conversely, patients unlikely to receive a transplant or unable to be considered (eg, size of HCC) may favor supportive and palliative care to improve HRQOL. For clinicians, prognostic data informs conversations about the course of illness and provides a context for more personalized care recommendations with the overarching goal of promoting early integration of supportive, palliative care with curative care.

Figure 1.

Chronic care model applied to advance liver disease care. AdvLD, advanced liver disease

Combined, these 3 elements (prognostic and therapeutic information, informed patients and caregivers, and prepared clinicians) can foster collaborative treatment planning between clinicians, patients, and caregivers. We choose the term collaborative treatment planning, as opposed to shared decision making. Traditional shared decision making typically focuses on treatment preferences for a single event (ie, the treatment “decision”). In contrast, collaborative treatment planning focuses on aligning treatments to patient priorities across the full course of a chronic illness,³⁵ and thus has the potential to successfully integrate (curative, supportive, and palliative end-of-life comfort) care in AdvLD. In this manner, patients and their caregivers may simultaneously opt for processes that meet a range of treatment outcomes earlier in their disease course (eg, enroll in transplant evaluation, participate in an alcohol abstinence program, receive training for ascites self-management, and engage in preparing an advance directive). The goals may shift more toward palliative and then end-of-life comfort care as the disease becomes potentially life threatening, especially for patients for whom liver transplantation is no longer an option (for any reason). However, this process is dynamic, as patients can move in both directions on the integrated AdvLD continuum as a result of shifts in AdvLD status and prognosis.

Structured tools (including print-, video-, or web-based media) can empower patients and caregivers for collaborative treatment planning with clinicians that fosters this early and ongoing integration. Two recent systematic reviews found that these tools can improve knowledge and treatment choices, including palliative care and goals of care communication in seriously ill patients.^36,37 However, most tools are designed for serious illnesses in which the trajectory is clear (eg, advanced cancer and dementia), and many only support one-time decisions. These prior systematic reviews called for tools and programs that facilitate ongoing treatment planning among clinicians and patients/caregivers facing serious but uncertain trajectories (eg, AdvLD), especially as illness progresses and circumstances evolve.^36,37 Unfortunately, critical knowledge gaps affect all 3 key elements described previously, rendering it difficult to design tools and platforms (eg, decision support, communication tools) for patients and their caregivers that incorporate early supportive and palliative care into management of AdvLD. We discuss these gaps subsequently.

Knowledge Gaps in Understanding of Illness Prognosis and Therapeutic Options in AdvLD

The 2 commonly used prognostic models for AdvLD are Child-Turcotte-Pugh and Model for End-stage Liver Disease scores. These scores are readily available for use in clinical care. Both rely on clinical and laboratory data and have modest discriminative ability (C-statistic <0.7) for mortality.³⁸ However, both omit variables known to predict adverse outcomes in AdvLD. Older age,^4,39 male sex,^4,39,40 physical and mental health comorbidities, and sarcopenia and frailty^41,42 predict suboptimal outcomes in AdvLD, but are not included in the available prognostic models.^40,43 Alcohol use⁴⁰ increases risk, whereas eradication of hepatitis C virus may decrease risk.⁸ Data also underscore social determinants of health (eg, marital status and homelessness)⁴⁴ and use of medical services (eg, emergency visits) in predicting hospitalization or mortality.^45,46 The latter are commonly used in generic models, including the Care Assessment Need score.⁴⁵ Expanding current models with these factors may increase their predictive ability for mortality. Further, although mortality is an important outcome, risk of hospitalization, and development of new liver complications are additional outcomes that matter to patients and clinicians, but not modeled in existing prognostic scores. The lack of these prognostic data related to the clinical outcomes that matter most to patients and caregivers hinders treatment planning.

Clinicians, patients, and caregivers are often unclear or unaware of the range of therapeutic options available to them across the integrated care spectrum. Bringing dietitians, physical therapists, mental health providers, pain specialists and transplant teams into routine collaborative care conversations with a shared mental model of integrative care to achieve patients’ priorities is critical for providing more patient-centered AdvLD care.^32,33 Decision support tools that better inform patients and clinicians of the range of evidence-based therapies are needed at the point of care to promote collaborative care conversations across the range of integrated AdvLD care.

Knowledge Gaps in Understanding Patients’ Perceptions of their Prognosis, Priorities, and Experiences

Little is known about patients’ and caregivers’ understanding of AdvLD prognosis, disease trajectory, and likelihood of receiving transplantation. Many patients with other serious illnesses hold inaccurate perceptions of their prognoses²⁵; patients with AdvLD may not be an exception. Additionally, it is unclear how (format and timing) patients and caregivers would prefer to receive prognostic and therapeutic information in clinical encounters.

There are also very limited data on patient-defined outcome goals of AdvLD care (ie, health and life outcomes that patients desire from their health care and are aligned with what matters most to them—patients’ values).³³ Few available studies suggest that while patients value curative care, they also endorse supportive care outcomes as important goals, highlighting the need for earlier integration of supportive and palliative care.²⁹ Studies in other areas of medicine underscore the importance of goal-oriented care,⁴⁷ which relies on eliciting abilities and activities that patients value the most, then collaboratively reaching care decisions that prioritize (rather than compromise) those values. In a study of patients with colorectal, head and neck, gastric, or esophageal cancers,⁴⁸ over half of the participants expressed values of balancing quality and length of life (62%) and self-engagement in care (69.9%). Other valued activities and abilities included connectedness and legacy (37%), function and self-sufficiency (18.5%), and life enjoyment (9%). These values were important to the participants and shaped their preferences and health care decisions. No research to date has comprehensively examined the health values of patients with AdvLD. Understanding patient and caregiver preferences for care consists of a clear articulation of what they are willing and not willing to do to achieve their outcome goals, what care they find helpful, and care they find burdensome and are not willing to do. A clear articulation of the health outcome goals that patients and caregivers desire across the disease spectrum is needed to adequately frame the bounds of patient-centered AdvLD care.³³

Last, patients’ illness-specific health care needs and their experiences with care likely shape how they access and engage in collaborative AdvLD care.^49-54 We found one recent review of literature that included 13 qualitative studies conducted from 1990 to 2012 that describe AdvLD patients’ and caregivers’ experiences.⁴⁹ We identified an additional 7 studies (Table 1) by updating the review through August 2016, and expanding the search criteria to include studies on AdvLD patients’ and caregivers’ needs and preferences Collectively, the data show that patients with AdvLD need physical, psychological, social, and educational support. Their illness experience is marked by debilitating fatigue and discomfort that impacts HRQOL and causes mental distress. Increasing complications are common stressors. Anxiety, depression, and posttraumatic stress disorder are prevalent among patients with AdvLD, and most patients do not receive psychiatric care. Many patients reported a desire to maintain physical and social independence, and to self-manage the illness. However, there is a great deal of uncertainty about the cause, self-care responsibilities, course of the disease, and future care needs. Little is known about the role of patients’ social support networks in the management of AdvLD. Some patients avoid discussing prognosis or acknowledging the possibility of death; lack of communication about prognosis can leave patients uncertain, unprepared, and unable to cope. In general patients expect their clinicians to initiate discussions about end-of-life care, but literature suggests that providers may avoid or truncate these important conversations.²⁹

Table 1:

Patient experience in advanced liver disease: qualitative studies (or studies containing a qualitative element) retrieved

Authors	Year Published	Study aims	Methodology	Study population	Disease cause represented	Post- Transplant	Key results
Abdi et al.52	2015	Describe experiences of individuals with liver cirrhosis	Qualitative in-depth interviews	10 patient participants (7 men; 3 women); ages 39-54; Location: Iran	Cirrhosis	No	High levels of need for support, awareness, education High levels of distress related to mood, physical limitations, costs, and fear of death More attention needed for effective communication and interactions with healthcare team
Day et al.65	2015	Explore experiences of patients living with non-malignant ascites receiving inpatient paracentesis to manage their symptoms	Interview Phenomenological analysis	6 patients (3 referred for transplant evaluation) Location: United Kingdom	Cirrhosis with Ascites, without cancer	No	Ascites impact on several social domains of their lives Uncertainty about future care needs, interest in transplant Varying degrees of awareness about self-care tasks and responsibilities
Etkind et al.50	2017	Examine patient experiences of uncertainty in advanced illness and develop a typology of responses and preferences to inform practice	Secondary analysis of 6 prior qualitative studies All were in-depth interviews Used inductive and deductive thematic analyses	30 total patients (12 women; 18 men); Heart failure (n=10), COPD1 (n=4), Renal disease (n=10), Cancer (n=5), Liver disease (n=1); Location: United Kingdom	Liver disease, heart failure, renal failure, cancer, and lung disease	No	Uncertainty is a central feature of illness experience Propose a typology to help guide patient preferences in-terms of temporal focus, informational needs and engagement with illness
Kendall et al.53	2015	Explore how patients with different advanced conditions and their family and professional caregivers perceive their deteriorating health and the services they need	Multi-perspective Interviews Thematic narrative analysis Longitudinal study (12-18 months)	828 interviews (156 patients; 114 family caregivers; 170 health professionals); Patient age 21-95; Location: Scotland	Multiple conditions ranging in illness trajectory and phase of illness across trajectories	No	Living with advanced illness, uncertain, chaotic, often with seemingly unrelated events Lack of understanding of illness, cause, and likely outcomes made explaining illness to others difficult Patient and caregivers struggle to speak openly about death, instead hope to avoid further deterioration Patient and family/caregivers struggle to identify when illness began
Kimbell et al.51	2015	Explore the experiences and support needs of people with advanced liver disease and those of their lay and professional careers	Qualitative in-depth interviews	37 participants (15 patients, 11 lay, and 11 professional careers); No age given; Location-United Kingdom	Advanced liver disease	No	Living, dying, and caring in AdvLD2 is dominated by pervasive, enduring, and universally shared uncertainty High levels of multidimensional distress Primary care providers and patients often reluctant to talk about prognosis, look to specialists to lead this conversation Managing uncertainty can occur through timely and appropriate supportive and palliative care for patients alongside effective management of unpredictable illness
Kunzler-Heule et al.66	2016	Explore experiences of informal caregiving for a relative with liver cirrhosis and overt hepatic encephalopathy	Interviews Interpretative phenomenological analysis	12 informal caregivers (4 male; 8 female); No age given; Location: Switzerland	Hepatic encephalopathy; liver cirrhosis	No	Feeling overwhelmed by loved one having unexplainable symptoms and behaviors Learning that presentation is a complication of liver disease Becoming aware of symptoms of hepatic encephalopathy; feelings of being tied down Experiencing and overcoming obstacles in working with healthcare professionals
Saracino et al.54	2018	Examine prevalence of psychiatric disorders and mental health service utilization among patients awaiting liver transplant	Clinical assessment tool, structured interviews, and chart review	120 patients (73 male; 47 female); Avg. age 56 (27-76). Location: United States (civilian)	Hepatitis C, alcoholic liver disease, nonalcoholic steatohepatitis	No	Past or present psychiatric diagnosis is common, as are current moderate-to severe-anxiety and depression symptoms and PTSD Low levels of HRQOL Many had previous or present use of mental health services but reported a range of barriers to access

AdvLD: advanced liver disease; COPD: chronic obstructive pulmonary disease; HRQOL, health-related quality of life; PTSD, posttraumatic stress disorder.

Knowledge Gaps in Understanding Clinicians’ Experiences

Clinicians’ approaches to supportive and palliative care in AdvLD are the starting point for developing patient-centered models, yet little is known about their experiences with the collaborative planning process. Integrated and collaborative care in serious illness should focus on patients’ outcome goals and care preferences, including end-of-life issues and trade-offs, and should begin early during a serious illness.³⁴ Available literature in other areas of medicine suggests that clinicians may be reluctant to initiate such discussions when patients are not experiencing severe symptoms, or when they have not exhausted curative treatment options.^55,56 Almost all (90%) patients receiving dialysis in one study reported that their clinicians had not discussed disease prognosis,⁵⁷ despite the relatively high annual mortality rate. Clinicians may avoid discussions of prognosis because they are uncertain about prognostic accuracy.⁵⁸ When clinicians do discuss prognosis, they tend to be overly optimistic,⁵⁹ which can sway patients to opt for curative care, rather than supportive and palliative care. Literature also suggests that clinicians wait to initiate prognosis conversations until very late in the course of illness, often only days before death, when not much can be done to change a patient’s experience.^56,60

Lack of integration of patients’ priorities into the care plan can result in undue focus on curative care even with dwindling chances of transplant, rather than proactively addressing supportive and palliative care goals.⁵⁵ Ambiguity about the purpose of collaborative planning, who should initiate it, and when in a patient’s trajectory it needs to occur can impede collaborative care. Some of these aspects (eg, who should initiate these discussions) are being addressed in an ongoing large randomized controlled trial. However, other questions (patients understanding of the purpose of planning and when it needs to occur) remain unanswered. Other barriers include clinicians knowledge gaps, low motivation, doubts about collaborative planning efficacy, and barriers to availability and reimbursement for palliative and supportive care.^55,61 Clinicians may feel uncomfortable having conversations about patients’ care preferences, outcome goals, and trade-offs for the fear of generating anxiety or negative emotions in patients.³³ For example, a recent proof-of-concept study to identify patient priorities in routine medical encounters demonstrated that clinicians find the process to be rewarding yet challenging, mostly owing to lack of patients’ readiness to engage in such discussions.³³ Time constraints and inadequate training can be significant barriers to collaborative treatment planning. There are no direct data about clinician experiences with AdvLD treatment and how they may incorporate collaborative treatment planning into normal clinical workflows.

Conceptual Framework for an Integrated Model of Collaborative AdvLD Care

Building from the chronic care model and observations that patient, clinician, and system factors all contribute to deficiencies in patient-centered care for serious chronic illness,^55,62 we propose a framework for patient-centered AdvLD care (Figure 2) with collaborative treatment planning among patients, their caregivers, and clinicians as its central, critical element.

Figure 2.

The integrated model for patient-centered advanced liver disease care. AdvLD, advanced liver disease

Our framework, drawn from several aligned models of care,^31-33,55 is predicated on conditions necessary for promoting collaborative treatment planning, including (1) patients’, caregivers’, and clinicians’ understanding of illness prognosis and available therapeutics (including understanding of transplant eligibility and preferences and processes for information sharing); (2) explication of patients’ experiences of care, outcome goals, and care preferences³³; (3) clarification of clinicians’ attitudes toward, experiences with, and capacity to integrate supportive and palliative care³¹; and (4) identification of structures and processes that facilitate delivery of coordinated interdisciplinary, patient-centered AdvLD care. Pursuant to the latter, the framework also draws on the Normalization Process Model,⁶³ which postulates that “normal,” routine clinical practices reflect local professional relationships and organization structures and that planned changes must take existing arrangements into account. These include clinicians’ understanding of their own and patients’ roles, willingness to incorporate changes, and the resources needed to “normalize” new care.

Moving Toward Individualized Collaborative, Integrated AdvLD Care

Individualized collaborative treatment planning in serious illness involves developing shared understanding and thus a shared mental model among patients, caregivers, and clinicians about what to expect in terms of disease progression, patient and caregiver priorities, and what therapeutic options are available (and realistic) in light of these priorities and AdvLD status. A collaborative care model of patient-centered AdvLD care also requires tools for eliciting patient’s life context, extent of social support, and patient and caregiver priorities (ie, their preferences for care and their health outcome goals),³³ and the alignment of treatments and services to achieve these goals.

To guide patients, caregivers, and clinicians through the process of individualized collaborative, integrated AdvLD care, we propose the development of the following strategies: (1) more accurate prognostic tools; (2) informed tactics for eliciting patients’ understandings of their illness, their goals for treatment (including eligibility for transplant), and their preferences for treatment strategies; and (3) analogous processes for identifying physicians’ preferences in light of these prognosis tools and awareness of patient preferences.

The first calls for quantitative modeling that more comprehensively capitalizes on granular data available in most modern electronic medical records and advanced analytical models to better predict outcomes. High-quality data on AdvLD prognosis and novel quantitative approaches can be applied to this data to measure AdvLD severity and model the likelihood of health outcomes that matter most to patients and caregivers.

The second and third call for largely qualitative inquiries into how patients and their clinicians understand the 2 parallel realities of AdvLD (chance of receiving curative liver transplant and a high risk of death) and derive outcome goals, care preferences, and treatment strategies to meet these goals. Data from patients would define the typical issues and concerns of patients, including knowing what to ask about and how to ask patients dealing with AdvLD. These interviews could elaborate the range of curative, supportive and palliative, and end-of-life-related outcome goals. These data can also facilitate the development of decision support tools to guide patients and caregivers in prioritizing and communicating their goals. Similarly, clinicians could provide a rich understanding of their experiences of and attitudes toward providing integrated AdvLD care, their understanding of their roles and expectations, perceptions of patients’ and other clinicians’ roles, and their willingness to incorporate new or adapted skills and responsibilities for themselves and others in delivering AdvLD care. Data can also identify the ideal workflow and referral patterns among clinicians providing different aspects of integrated AdvLD care.

Collectively, these data can inform the design of various decision support tools that incorporate prognostic data, patients’ priorities, and the identification of available AdvLD treatments that align with patient priorities. Similar to all implementation efforts, these tools and processes may be met with patient, clinician, and system-level barriers. Successful implementation may be facilitated by simultaneously assessing how different kinds of evidence inform current practices and understanding the impact of contextual features of AdvLD care, including but not limited to geography, financial incentives, and local culture and workflows.⁶⁴ Data from these assessments can serve as the foundation to develop explicit clinical workflows, clinician and team training modules, and incentives for developing processes and structures to overcome barriers and allow sustainable implementation of an individualized patient-centered model of AdvLD care that integrates curative, and supportive and palliative care in routine clinical encounters.

Conclusions

Recent patient-centered models of care in other conditions, such as cancer, have promoted early integration of curative care with supportive and palliative care. These models can improve quality and even length of life.²⁸ Integrated care models may be even more important in noncancer conditions such as AdvLD, in which disease course can be more prolonged and uncertain, yet much can be done with patients to reduce complications and maintain both function and well-being.³¹ However, there are several reasons why patient-centered integrated models for AdvLD have been slow to develop. The possibility of receiving curative liver transplantation has traditionally conflicted with receipt of supportive and palliative care. Several other reasons at the patient and clinician levels have delayed the development of an integrated care model. We describe these reasons, identify the key gaps in knowledge, and present a framework to fill these gaps crucial to developing integrated patient-centered care for AdvLD. We conclude that successful early integration of curative care with supportive and palliative care should be truly patient centered by focusing on individual health outcome goals.

Abbreviations used in this paper:

AdvLD

advanced liver disease

HCC

hepatocellular cancer

HRQOL

Health-Related Quality of Life