Clinical Gastroenterology and Hepatology 2021;19:646–656

CLINICAL PRACTICE UPDATE

AGA Clinical Practice Update on Palliative Care Management
in Cirrhosis: Expert Review
Puneeta Tandon,* Anne Walling,‡,§ Heather Patton,k and Tamar Taddei¶

*Liver Unit, Division of Gastroenterology, University of Alberta, Edmonton, Alberta, Canada; ‡VA Greater Los Angeles
Healthcare System, Los Angeles, California; §Division of General Internal Medicine and Health Services Research, University of
California, Los Angeles, Los Angeles, California; kGastroenterology Section, VA San Diego Healthcare System, San Diego,
California; and ¶VA Connecticut Healthcare System, West Haven, and Department of Medicine, Section of Digestive Diseases,
Yale School of Medicine, New Haven, Connecticut

Care with palliative care principles (aka Palliative Care, lower costs of care, improved communication between
PC) is an approach to care that focuses on improving the healthcare professionals, and better caregiver outcomes.5
quality of life of patients and their caregivers who are During the last decade, there has been an increasing
facing life-limiting illness. It encompasses the assessment recognition of unmet needs for PC for patients with
and management of symptoms and changes in functional cirrhosis. This has been associated with a recent surge in
status, the provision of advance care planning and goals of
funding and publications addressing ACP and the impact
care discussions, prognostication and caregiver support.
of PC on symptoms and health-related quality of life.4,6
PC is applicable across the spectrum of cirrhosis regard-
less of transplant eligibility. Although a common miscon- To date however, unlike for cancer and other chronic
ception, PC is not synonymous with hospice care. organ failures (lung, cardiac, renal),7–10 there remain
Unfortunately, despite a high symptom burden and chal- limited guidelines/guidance statements to direct clini-
lenges with predicting disease course and mounting evi- cians in the area of PC and cirrhosis.
dence to support the benefits of PC in patients with This expert review was commissioned and approved by
cirrhosis, comprehensive PC and referral to hospice are the American Gastroenterological Association (AGA) Insti-
carried out infrequently and very late in the course of tute Clinical Practice Updates Committee and the AGA Gov-
disease. In order to meet the needs of our increasingly erning Board to provide timely guidance on a topic of high
prevalent cirrhosis population, it is important that all cli- clinical importance to the AGA membership and underwent
nicians who care for these patients are able to work
internal peer review by the Clinical Practice Updates Com-
together to deliver PC as a standard of care. To date there
mittee and external peer review through standard proced-
are limited guidelines/guidance statements to direct cli-
nicians in the area of PC and cirrhosis. Herein we present ures of Clinical Gastroenterology and Hepatology. The
an evidence-based review of ten Best Practice Advice authors have reviewed and summarized available data
statements that address key issues pertaining to PC in pertinent to the provision of PC in patients with cirrhosis to
patients with cirrhosis. generate specific practice advice (Best Practice Advice
[BPA]) addressing key aspects of clinical management.
Keywords: Palliative Care; Hospice; Cirrhosis. BPA 1: Care with palliative care principles should
be provided to any patient with advanced serious
chronic illness or life-limiting illness such as
atients with cirrhosis have a life-limiting chronic
P illness with a median survival ranging from 2
years in decompensated disease to 12 years in compen-
cirrhosis, irrespective of transplant candidacy; this
care should be based on needs assessment instead of
prognosis alone, delivered concurrently with cura-
sated disease.1 Associated with a high burden of physical tive or life-prolonging treatments, and tailored to
and psychological symptoms even in the compensated stage of disease.
state, the quality of life of patients with worsening dis- Care with palliative care principles (aka palliative
ease severity parallels that of patients with advanced care, PC) is an approach to care that focuses on
cancer.2,3 Despite this high symptom burden and chance improving the quality of life of patients and their care-
for acute unexpected deteriorations in their disease givers who are facing life-limiting illness. At a
course, rates of advance care planning (ACP) and goals
of care directives remain low, symptom management is
suboptimally addressed, and specialty palliative care Abbreviations used in this paper: ACP, advance care planning; AGA,
(PC) and hospice referrals occur infrequently and late American Gastroenterological Association; BPA, Best Practice Advice;
MELD, Model for End-Stage Liver Disease; PC, palliative care.
in the course of the disease.4
Most current article
In non-cirrhosis populations, there is established ev-
idence that PC is associated with better quality of life for © 2021 by the AGA Institute
1542-3565/$36.00
patients, less aggressive treatments at the end of life, https://doi.org/10.1016/j.cgh.2020.11.027
April 2021 Palliative Care Management in Cirrhosis 647

Table 1. Best Practice Advice Statements

Target audience Hepatologists, gastroenterologists, primary care providers, critical care providers,
palliative care specialists, hospitalists
Target population Patients with compensated cirrhosis, patients with decompensated cirrhosis, patients
with cirrhosis awaiting liver transplantation
Setting Gastroenterology/hepatology clinics, primary care clinics, palliative care clinics,
hospital wards
Terminology Palliative care principles: The early identification and management of physical,
psychological, social, and spiritual suffering; excellence in communication for
advance care planning, goals of care discussions, and prognostication; screening
for caregiver fatigue; and providing needed caregiver support. The incorporation of
these principles is meant to optimize quality of life for patients and their families
and caregivers.
Palliative care: The provision of care inclusive of palliative care principles that may be
delivered by healthcare providers from any specialty and within any healthcare
setting
Specialty palliative care: delivery of care by a palliative care specialist with
dedicated training and/or board certification in hospice and palliative
medicine.
Primary palliative care: delivery of care by a clinician who is not a palliative
care specialist.
BPA statements
1 Care with palliative care principles should be provided to any patient with advanced
serious chronic illness or life-limiting illness such as cirrhosis, irrespective of
transplant candidacy; this care should be based on needs assessment instead of
prognosis alone, delivered concurrently with curative or life-prolonging treatments,
and tailored to stage of disease.
2 Care inclusive of palliative care principles may be delivered by healthcare providers
from any specialty within any healthcare setting.
3 Providers caring for persons with cirrhosis should assess for the presence and
severity of symptoms within physical, psychological, social, and spiritual domains
related to their liver disease, its treatment, and prognosis.
4 Across the spectrum of cirrhosis, excellence in communication is integral to high-
quality advance care planning, goals of care conversations, and the cultivation of
prognostic awareness with patients and caregivers.
5 Routine care for patients with cirrhosis, and particularly those with decompensated
disease, should include assessment of caregiver support and screening for
caregiver needs.
6 Prognosis should be evaluated by gastroenterology/hepatology providers during
routine care visits and at sentinel events.
7 Goals of care discussions in patients with cirrhosis should be repeated at sentinel
events including hospital or intensive care admission, before initiation of life-
supporting therapies, before surgery, on new onset of cirrhosis-related
complications, and after determination of transplant eligibility.
8 Because lack of time is one of the major barriers to administering palliative care,
healthcare providers should consider how they can optimize efficiencies in
palliative care delivery (identifying local billing codes, prescreening surveys carried
out by ancillary staff, development of multidisciplinary teams).
9 Dedicated specialist palliative care services are often a limited resource. As such,
healthcare providers should work together with local specialist palliative care
teams to establish clear triggers and pathways for referral.
10 Healthcare providers caring for patients with cirrhosis should provide timely referral to
hospice for patients who have comfort-oriented goals and prognosis of 6 months
or less.

BPA, best practice advice.

fundamental level, PC includes the assessment and increased patient and caregiver satisfaction, reduced
management of symptoms and changes in functional symptom burden, and reduced acute care utilization.5
status, the provision of ACP and goals of care discussions, Among others, 3 common misconceptions about the
prognostication, and caregiver support.11 Across other meaning of PC have limited the structured integration of
life-limiting conditions, the incorporation of PC has been comprehensive PC within cirrhosis care.12–17 The first is
associated with improvements in quality of life, that PC is equivalent to hospice care or end-of-life
648 Tandon et al Clinical Gastroenterology and Hepatology Vol. 19, No. 4
Table 2. Moving From Awareness to Execution

Expected (awareness) Aspirational (execution)

Cirrhosis is life-limiting Early integration of care with palliative principles

Goals of care discussion Advanced directive, relevant location-specific goals of
care designation on every patient, reviewed at every
event
Routine assessment of symptoms Routine administration of symptom surveys by clinic staff
Care coordination that allows continuous management of
symptoms
Referral to specialist palliative care when symptoms are Co-management of patients with a multidisciplinary team
beyond scope
Ask about caregiver burden Systematic assessment of caregiver burden
Routine management of caregiver burden
As needed adjustment of clinical schedules to allow time Preemptive scheduling with use of advance care planning
for discussion with use of time-based billing codes codes
Patients have opportunity to receive hospice services at Patients understand overall trajectory of illness and are
the end of life informed with prognosis in line with prognostic
awareness and readiness. Timely referral to hospice
for patients with a prognosis of 6 months or less to
ensure a “comprehensive, socially supportive, pain-
reducing, and comforting alternative to technologically
elaborate, medically centered interventions.85”

NOTE. The integration of universal palliative care for patients with cirrhosis is a process. This table presents both the current target expectations for palliative care
in cirrhosis and targets to aspire to. This information is broken into even more actionable steps in Supplementary Table 1.

care.15,18 Although hospice care falls within the larger Figure 1 and discussed in more detail in the sections
umbrella term of PC, hospice and PC are not the same. below, an eventual goal would be consistent delivery of a
Hospice care focuses on end-of-life care for patients who comprehensive, needs-based, and stage-of-disease
have an estimated survival of <6 months. On the other tailored PC toolkit to all patients with cirrhosis regard-
hand, PC is applicable at all stages of a life-limiting illness less of their transplant status. For providers within each
and can be initiated to meet unmet patient and/or patient’s circle of care, this will require an understanding
caregiver needs throughout the trajectory of a serious of the meaning of and the importance of PC, collabora-
illness. A second misconception is that PC cannot be tion, establishing role clarity (ie, who does what), clear
delivered concurrently with curative or life-prolonging documentation, and the development of increased com-
treatments such as liver transplantation.15 This miscon- fort with delivery of elements in the PC toolkit. Certain
ception has been challenged by data that support the elements of the PC toolkit will be more naturally
presence of a high symptom burden and caregiver championed by certain providers depending on their
distress in transplant listed patients as well as data that skillset (eg, prognostication for a hepatologist versus
support significant symptom improvement with depression management for a primary care practitioner).
PC.4,19–25 A third is that PC should only be delivered to All providers can incrementally develop comfort with PC
decompensated patients. Recent data support that skills, and there are multiple resources available to do
distress or depressive symptoms can be identified even this. A potential staged approach for hepatologists/gas-
in Child-Pugh class A patients, many of whom have troenterologists to move from awareness to execution of
quality of life and symptom scores well below population PC is presented in Supplementary Table 1.
norms.2,3 BPA 2: Care inclusive of palliative care principles
Although PC may seem on the surface to be unfa- may be delivered by healthcare providers from any
miliar territory for many health practitioners, the reality specialty within any healthcare setting.
is that the majority of us use at least some of these All healthcare providers should be able to offer pa-
principles in our day-to-day practice. For example, the tients and their families care inclusive of PC principles
hepatologist who arranges a paracentesis to treat the across healthcare settings from ambulatory environ-
abdominal discomfort associated with tense ascites or ments to tertiary hospitals.26–28 The limited workforce of
provides information to a patient about prognosis and qualified specialist PC providers in comparison with the
the natural history of their disease is providing aspects of growing population of patients with cirrhosis un-
PC. The same applies to the primary care practitioner derscores the need for primary care and non-PC
who screens and initiates therapy for depression or sleep specialist providers to be well-versed in generalist (pri-
disturbance. As summarized in Tables 1 and 2 and mary) PC delivery.29–31 Current medical and nursing
April 2021 Palliative Care Management in Cirrhosis 649

Figure 1. With a shared

understanding of PC,
healthcare providers within
the patient’s circle of care
can work together to
ensure that a tailored,
comprehensive PC toolkit
is provided to all patients
with cirrhosis. ACP,
advanced care planning;
BPA, best practice advice;
ESAS, Edmonton Symp-
tom Assessment System;
GCD, Goals of Care
Designation; MELD-NA,
Model for End-Stage Liver
Disease sodium; PHQ-2,
Patient Health Question-
naire-2.

education curricula often lack adequate PC content or BPA 3: Providers caring for persons with cirrhosis
formal training32,33 in PC, resulting in significant varia- should assess for the presence and severity of
tion in both the understanding and practice of PC. symptoms within physical, psychological, social, and
Because of shortcomings in medical education pertaining spiritual domains related to their liver disease, its
to the delivery of comprehensive PC, providers may need treatment, and prognosis.
to pursue additional training to support this practice. Provision of PC cannot be accomplished without
Professional associations are encouraged to support this evaluation and routine reassessment for the presence
practice through the provision of educational resources and severity of symptoms that, individually or collec-
(eg, continuing medical education meeting or online tively, impact quality of life. Symptoms may be influ-
educational meetings). Ongoing studies seek to improve enced by a multitude of variables including underlying
care delivery models and providers’ comfort and clinical severity of cirrhosis, side effects of medications or other
acumen with PC delivery in multiple different specialties therapies used in the management of cirrhosis, the psy-
including hepatology.23,34,35 chological and spiritual impact of life-threatening illness,
650 Tandon et al Clinical Gastroenterology and Hepatology Vol. 19, No. 4

Table 3. Instruments Available for Assessment of Symptoms in Cirrhosis

Instrument Domains Items, scale

Chronic liver disease questionnaire Abdominal symptoms, fatigue, systemic 29 questions scale 1–7
(CLDQ)86 symptoms, activity, emotional function,
worry
Liver disease quality of life (LDQOL)87 Symptoms, effects on activities of daily 75 questions
living, concentration, memory, sexual 0–100 scale
function, sexual problems, sleep,
loneliness, hopelessness, quality of
social interaction, health distress, self-
perceived stigma of liver disease
Short form liver disease quality of life Symptoms, effects of liver disease, memory/ 36 questions
(SF-LDQOL)88 concentration, sleep, hopelessness, 0–100 scale
distress, loneliness, stigma of liver
Liver disease symptom index (LDSI)89 Itch, joint pain, abdominal pain, daytime 18 questions
sleepiness, worry about family situation, Symptoms 1–5 scale
decreased appetite, depression, fear of Symptom hinderance 0–10 scale
complications, jaundice
Liver Cirrhosis Patient-reported Outcome Physical, psychological, social, therapeutic 55 items (0–4 scale) within 13 dimensions
Measure (LC-PROM)90 belonging to 4 domains
Patient-Reported Outcomes Information Anxiety/fear, cognitive function, depression/ 9 health domains
System (PROMIS-29, PROMIS-CAT)91 sadness, fatigue, instrumental support, Access to gender- and age-matched
pain interference, physical function, normative data
sleep disturbance, social roles
SF-36 Vitality, physical role functioning, bodily 36 questions, split into 8 domains with 2
pain, general health perception, physical summary scores: the physical
function, social role functioning, component summary (PCS) and the
emotional role functioning, mental health mental component summary (MCS)
Sickness Impact Profile (SIP)92 Sleep and rest, eating, work, home 136 items in 12 categories
management, recreation and pastimes,
ambulation, mobility, body care and
movement, social interaction, alertness
behavior, emotional behavior,
communication
Nottingham Health Profile (NHP)93 I: energy, sleep, emotions, pain, mobility, 2 parts
social isolation and II: paid employment, Part I: 38 questions in 6 subareas
housework, hobbies, family life, social Part II: 7 life areas
life, sex life, holidays
Distress Thermometer (DT)94,95 Overall assessment of distress plus practical Distress: 0 (no distress) to 10 (extreme
problems, family problems, emotional distress) visual analogue scale
problems, spiritual/religious concerns, resembling a thermometer
physical problems Problem list: 39 (Yes/No) and 1 open ended
(other problems)
Edmonton Symptom Assessment System Pain, fatigue, myalgia, sexual dysfunction, 10 items
(ESAS)19,96 anxiety, sleep disturbance, appetite, 0–10 visual analogue scale
well-being, dyspnea, pruritis Scores: Physical, Emotional, and Total
Patient Health Questionnaire (PHQ-9)97 Anhedonia, feeling down, sleep, feeling 9 items scored 0–3; total score 0–27 used to
(PHQ-2) tired, appetite, feeling bad about self, categorize depression severity as
concentration, activity, suicidality minimal/none, mild, moderate,
Anhedonia, feeling down (first two items of moderately severe, or severe
the PHQ-9) 2 items. If yes selected for one or both
questions, go on to perform the PHQ-9.
If no to both questions, screen is
negative for depression.

NOTE. Included in the table are selected liver-specific tools as well as instruments that may be applicable to other patient populations. At this point, there are few
data to support which tools are best to incorporate into research or clinical practice. These instruments vary in the domains assessed, their length, scoring, and
availability in languages other than English. The choice of instrument will vary depending on the clinical need as well as need for expediency.
April 2021 Palliative Care Management in Cirrhosis 651

loss of independence/identity as a result of disability, disease.40,41 A recent systematic review in support of the
financial burden, impact of chronic illness on family and National Consensus Project clinical practice guidelines
other vital relationships, and uncertainty or anxiety concluded that there was moderate quality evidence for
pertaining to prognosis. This complex and dynamic ACP (both advance directives and care planning con-
milieu is optimally evaluated with the assistance of versations) having a positive impact on preference
validated instruments, a multidisciplinary care team, or documentation and the receipt of preference-concordant
ancillary training. Importantly, most physical symptoms care.42 More research is needed to establish best prac-
in cirrhosis are best addressed via optimal management tices specifically in cirrhosis, with at least one study
of cirrhosis-related complications (eg, treatment of fluid underway to evaluate different approaches to inform
overload), although some (eg, pruritus) may require best practices.23 Current clinical practice can be
additional specific therapies. informed by research from other serious illnesses and
A systematic review of symptom prevalence in adult general ACP tools and/or provider-focused communica-
patients with end-stage liver disease summarized the tion skills training courses.
following as most commonly reported: pain (30%–77%), Much of the data supporting high-quality communi-
breathlessness (20%–88%), muscle cramps (56%–68%), cation regarding prognosis and care planning is from the
sexual dysfunction (53%–93%), insomnia (26%–77%), cancer literature. A multi-site U.S. cohort study of pa-
daytime sleepiness (30%–71%), fatigue (52%–86%), tients with advanced cancer and their caregivers showed
pruritus (47%–64%), anxiety (14%–45%), and depres- that timely ACP and goals of care conversations were
sion (10%–64).3 Another integrative review including 26 associated with improved quality of life, less intensive
quantitative studies found the most commonly reported treatments at the end of life, earlier hospice enrollment,
symptoms across chronic liver disease populations were and better bereavement adjustment in family mem-
fatigue, depression, sleep disturbance, pain, cognitive bers.43 In oncology, early integration of PC is supported
impairment, and dizziness.36 There are many tools by professional society guidelines and models that inte-
available to facilitate the evaluation of symptoms that grate assessing prognostic awareness throughout the
occur across multiple domains as well as an overall es- disease trajectory.7,44,45 Although more research is
timate of symptom severity on quality of life. These tools needed in this area to inform practice, a number of
vary in their length, content, applicability to clinical care groups have made courses and resources available to
versus research, inclusion of liver-specific variables, and improve communication skills when working with pa-
availability in languages other than English (Table 3). tients with serious illness, such as Vital Talk, Respecting
There is evolving expert opinion-based literature to Choices, and Ariadne Lab’s Serious Illness Conversation
guide the selection of tools in cirrhosis.37 As highlighted guide.46–49 Patient facing tools such as PREPARE for your
by Verma et al,38 the routine integration of these Care have also been shown to be beneficial.50
assessment metrics in real-world hepatology care will BPA 5: Routine care for patients with cirrhosis,
require several steps focused on implementation meth- and particularly those with decompensated disease,
odology including local buy-in and action plans that are should include assessment of caregiver support and
tied to the results. screening for caregiver needs.
Although the primary objective for symptom assess- Within the PC literature, the term caregiver burden is
ment in patients with cirrhosis is to guide interventions identified through the following attributes: perception of
that may alleviate suffering, there is also utility in physical symptoms, psychological distress, impaired so-
symptom assessment in determining prognosis cial relationships, spiritual distress, financial crisis, role
(Supplementary Table 2). strain, disruption of daily life, and uncertainty.51 Down-
BPA 4: Across the spectrum of cirrhosis, excel- stream consequences of caregiver burden may include
lence in communication is integral to high-quality impaired physical health status, psychiatric illness, and
advance care planning, goals of care conversations, poor quality of life. There are several instruments
and the cultivation of prognostic awareness with available for the evaluation of caregiver burden including
patients and caregivers. the Zarit Burden Interview,52 the Caregiver Reaction
Studies suggest that patients with cirrhosis often have Assessment,53 Family Strain Questionnaire-Short Form
preferences for care that are not in accordance with fully (FSQ-SF),54 the Caregiver Strain Index (CSI),55 and
aggressive care. For example, the SUPPORT study sur- measures offered through PROMIS (accessible through
veyed patients with at least 2 features of advanced dis- the HealthMeasures website56). Quality of life domains
ease (serum albumin 3.0 mg/dL, uncontrolled ascites, including limitation in functioning due to emotional
hepatic encephalopathy, cachexia, upper gastrointestinal health, vitality, mental health, and social functioning are
bleed) and showed that 43% would rather die than impaired among primary caregivers of people with
receive care in a nursing home, and most reported cirrhosis relative to national norms.57
wanting to die rather than live in a coma or with a Among patients with cirrhosis who have previously
ventilator or feeding tube.39 To ensure that patients’ experienced hepatic encephalopathy, cognitive perfor-
preferences for care are followed, ACP and goals of care mance and Model for End-Stage Liver Disease (MELD)
conversations should be addressed early in the course of score are correlated with caregiver burden.58 Caregivers
652 Tandon et al Clinical Gastroenterology and Hepatology Vol. 19, No. 4

of individuals with alcohol-related liver disease may face prognosis can be gained by considering data around
additional strain, potentially related to variance in comorbidities, functional status/frailty, the rapidity of
available social networks, and caregivers of patients functional decline, and other factors such as the potential
awaiting liver transplant frequently feel unprepared to for improvement with etiological therapy.68–71 The data
adequately perform their roles.21,59 A recent cross- suggest that clinicians remain overly optimistic when it
sectional study of 100 patients with cirrhosis and their comes to their individual patients’ prognoses.72 In a large
caregivers identified that caregiver burden scores were multi-center study evaluating end-of-life care comparing
significantly increased among patients with either pre- physician-estimated and modeled prognoses, both phy-
vious overt hepatic encephalopathy or minimal hepatic sicians and models failed in predicting mortality in
encephalopathy and inversely correlated with liver dis- cirrhosis, underscoring the difficulties inherent in pre-
ease severity scores.60 Repeated hospital admissions, dicting the clinical course of this disease.73
alcohol as etiology, and lower socioeconomic status were Alongside the estimation of prognosis, it is important
independent predictors of caregiver burden.60 Caregiver that practitioners are familiar with how to assess an in-
strain before and after liver transplant from a single dividual patient’s desire to hear this information and
center study appears to predominantly impair mental, how to present it to them within their context of prog-
rather than physical, quality of life.61 Higher caregiving nostic awareness and readiness to hear this information.
strain (measured via the Caregiver Strain Index) was Various statements can be used to initiate these con-
significantly correlated with lower mental quality of life, versations including a statement from the Serious Illness
lower life satisfaction, and more mood disturbance. Conversation Guide49 such as, “I want to share with you
The financial implications of caregivers of patients my understanding of where things are with your ill-
with cirrhosis are profound if evaluated in a compre- ness.”, “Is this ok with you?”, or from a recent review
hensive fashion. In a prospective assessment of older on ACP in cirrhosis,74 “To make sure that both you and
adults with cirrhosis included in the Health and Retire- your family are prepared, I like to address both the best-
ment Study, nearly 30% of patients with cirrhosis and worst-case scenarios regarding how your cirrhosis
demonstrated functional decline over a median of 2 may progress. Can we talk about these now?”. In patients
years, and 18% of individuals with cirrhosis had severe with prognostic ambivalence and worsening disease that
functional decline.62 On the basis of the median national make prognostic conversations even more time sensitive,
wage for a home health aide, the annual costs of provi- “what if” scenarios can be useful to elicit preferred
sion of care to older adults with cirrhosis in this study healthcare decisions.45
were estimated to be more than double those for an age- BPA 7: Goals of care discussions in patients with
matched comparison group (for 2009, $4700 per person cirrhosis should be repeated at sentinel events
with cirrhosis compared with $2100 without cirrhosis). including hospital or intensive care admission,
In addition to assessing caregiver burden, it is before initiation of life-supporting therapies, before
important to consider practice and locale-specific path- surgery, on new onset of cirrhosis-related complica-
ways to provide resources to caregivers in need. A small tions, and after determination of transplant
prospective trial of 20 patients with cirrhosis/caregiver eligibility.
dyads has shown that a short (4-week) intervention of Despite the benefit of ACP and goals of care conver-
mindfulness and supportive group therapy resulted in sations, some small studies show that these are under-
improved measures of caregiver burden, mental health, used among patients with cirrhosis. In a recent
and sleep.63 More research is needed to understand the publication from Alberta where there is a public aware-
optimal provision and impact of this support.64–66 ness campaign to promote ACP, one third or less had
BPA 6: Prognosis should be evaluated by gastro- documented directives or goals of care.75 The lack of
enterology/hepatology providers during routine care documented ACP and late initiation of PC in this popu-
visits and at sentinel events. lation were also observed for patients in a recent study
As a cornerstone of PC, prognostication should be from Yale.76 In a recent survey study of hepatology and
carried out at all routine care visits and reevaluated gastroenterology cirrhosis providers by Ufere et al,77
during sentinel events such as hospitalization or inten- most respondents (81%) thought that ACP discussions
sive care unit admission, on the development of liver- occurred too late in the illness trajectory. This may be
related complications including hepatocellular carci- due to a number of barriers such as insufficient
noma, after the determination of transplant eligibility, communication between clinicians and families about
and before the initiation of life-supporting therapies or goals of care and lack of training.
surgery. Using the RAND/UCLA modified Delphi method, a 9-
Population-based prognostic scores such as MELD, member, multidisciplinary expert panel has identified
the MELD sodium, the Child-Pugh classification, and 13 quality indicators for information and care planning
liver-specific critical care scores for acute-on-chronic for patients with “end stage liver disease”.78 Sentinel
liver failure such as the CLIF-C Acute-on-Chronic Liver events for initiating goals of care discussions include
Failure score67 have recognized limitations when applied diagnosis of decompensated cirrhosis, consideration of
to individual patients. A more complete understanding of liver transplant, admission to an intensive care unit,
April 2021 Palliative Care Management in Cirrhosis 653

admission to a hospital, use of a mechanical ventilator, that may arise. Although there is limited evidence on this
and initiation of hemodialysis.78 These measures were in cirrhosis, tools including the Supportive and Palliative
recently pilot tested and should be tested in larger Care Indicators Tool can be used to guide referral.82,83
populations to inform quality improvement for patients Similarly, in a setting where primary PC is being pro-
with cirrhosis.79 vided, it is essential that primary care physicians and
BPA 8: Because lack of time is one of the major hepatologists/gastroenterologists are aware of in-
barriers to administering palliative care, healthcare dications for specialist referral and that role clarity is
providers should consider how they can optimize established around “who does what” for primary PC.
efficiencies in palliative care delivery (identifying BPA 10: Healthcare providers caring for patients
local billing codes, prescreening surveys carried out with cirrhosis should provide timely referral to
by ancillary staff, development of multidisciplinary hospice for patients who have comfort-oriented
teams). goals and prognosis of 6 months or less.
In the survey study by Ufere et al,77 91% of cirrhosis Accurate prognostication is essential to optimal PC
providers noted competing demands for time as a sig- delivery and hospice referral. Understanding the limita-
nificant barrier to engaging in PC; another 76% cited tions of accurate prognostication in cirrhosis (BPA 6),
insufficient reimbursement as a limitation to PC de- hospice referral should be made in a timely fashion and,
livery.77 Healthcare policy suggests that the value of PC is ideally, in the context of preceding ACP and goals of care
significant, and trends in reimbursement are beginning discussions. It is important to note that patients are
to reflect this with codes for chronic care management, appropriate for hospice benefits if prognosis is estimated
ACP, and transitional care management.80 Validated to be less than 6 months. Insurance coverage of hospice
screening surveys (BPA 3, Table 3) can be administered benefits usually requires comfort-focused care without
by ancillary clinic staff to alert providers of symptoms pursuit of further curative treatments. Referral to hos-
requiring attention. Where feasible, advanced practice pice should not come within days of death or as a sur-
providers with PC training can be embedded in practices prise to patients. Hospice care should instead be an
for multidisciplinary care, allowing PC to be shouldered expected eventuality for patients who have been well-
by a group rather than an individual.42 A randomized informed along the continuum of care of the natural
control trial suggests integration of multidisciplinary PC history of cirrhosis.
early in the course of advanced cancer treatment is more Unfortunately, many studies have shown late or no
beneficial than PC consultation42; these types of studies referral to PC/hospice in patients with cirrhosis.
should be assessed in patients with cirrhosis.81 Although studies have shown an increase in national
BPA 9: Dedicated specialist palliative care ser- trends of PC/hospice referral over time as well as ben-
vices are often a limited resource. As such, health- efits of lower costs and procedure burden among those
care providers should work together with local who are receiving PC/hospice care, in patients with
specialist palliative care teams to establish clear cirrhosis there are still substantial barriers to receiving
triggers and pathways for referral. this care relating to ethnicity, geography, and comorbid
Depending on practice and locale, the integration medical and psychiatric conditions.12,84
between specialist PC teams and non-PC providers
(primary care physicians, advance practice providers,
gastroenterologists, hepatologists, transplant surgeons, Supplementary Material
emergency department and intensive care unit physi-
cians) ranges from complete integration within inpatient Note: To access the supplementary material accom-
or outpatient hepatology/transplant services to a distinct panying this article, visit the online version of Clinical
specialty PC consultation service.24 Gastroenterology and Hepatology at www.cghjournal.org,
Primary PC (ie, symptom screening, basic symptom and at https://doi.org/10.1016/j.cgh.2020.11.027.
management, ACP, prognosis discussions) should be
provided by non-PC providers (Figure 1). This allows References
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Supplementary Table 1. Potential Steps for Moving to Awareness and Then to Execution

April 2021
Awareness of the tenets of palliative Suggested steps for non-PC Opportunities for non-PC specialist Mature practice targets for non-PC
care (PC) in cirrhosis according to specialist providers to introduce providers to expand on specialist providers to implement
BPA statements BPAs into practice implementation of BPAs in practice BPAs in practice

BPA-1  PC s hospice Teach your learners about PC principles Pick a week to actively identify Early integration of care with palliative
 PC can and should be offered along- and the broad applicability of PC opportunities where you could initiate principles in all patients with cirrhosis.
side “curative” therapies across the range of patients with PC in your outpatients and your
 PC can also be relevant for compen- cirrhosis. inpatients with cirrhosis.
sated patients
BPA-2 Providers involved in the care of patients Identify which PC principles you have From BPAs 3–10 choose an area you A systematic approach to early
with cirrhosis should strive to gaps in your comfort or knowledge wish to begin to integrate into your integration of care with palliative
contribute to care with palliative level: practice. principles in all patients with cirrhosis
principles. Symptom screen and basic by all providers involved in their care.
management
Prognostication, prognostic readi
ness assessment
ACP and GCD
Function screen
Caregiver needs screen and
management
BPA-3 The symptom burden of patients with Set up a collaborative brainstorming Initiate routine screening of symptoms Evidence-based symptom scales and
cirrhosis is tremendous. session between local primary care and distress in your liver clinic using guidelines are readily available to all
physicians and specialty PC the ESAS and the Distress providers to support universal
colleagues to determine who would Thermometer (or other such tools). symptom screening and
manage symptoms when they are Ancillary staff can initiate these. management. Role clarity
flagged on routine screening. discussions between
gastroenterology/hepatology and
primary care as to who initiates these
screens and who acts on them.

Palliative Care Management in Cirrhosis 656.e1

BPA-4 Early advance care planning and goals of Explore ACP tools and communication Block off separate clinic visits to initiate Advanced directive, relevant locale-
care designations are infrequent but courses about to support high-quality ACP and GCD conversations, initially specific goals of care designation on
important to ensure value aligned ACP and GCD conversations in your decompensated patients and every patient.
medical care. This requires practice Examples of provider facing resources: then moving to tailored conversations
with high-quality communication. (Vital Talk or Respecting Choices/ in the compensated patients.
Center to Advance Palliative Care
Courses or Serious Illness
Conversation Guide)
Examples of patient facing resources:
can be found at the American Society
on Aging website
Supplementary Table 1. Continued

656.e2
Awareness of the tenets of palliative Suggested steps for non-PC Opportunities for non-PC specialist Mature practice targets for non-PC
care (PC) in cirrhosis according to specialist providers to introduce providers to expand on specialist providers to implement

Tandon et al
BPA statements BPAs into practice implementation of BPAs in practice BPAs in practice
BPA-5 Caregiver burden is common, especially Become familiar with one of the Talk to your local primary care and Initiate routine screening of caregiver
in patients with decompensated caregiver burden indices (eg, the specialty PC colleagues about the burden. These can be carried out by
disease. It has physical, mental, and Caregiver Strain Index). types of resources that are available ancillary staff. Locale-specific
financial consequences. to caregivers once caregiver burden resources provided to the patient/
is identified. caregiver.
BPA-6 Prognostication can be challenging in Become familiar with prognostication See BPA-4: sign up for a short course Prognostic readiness should be
cirrhosis, and healthcare providers tools in addition to the MELD and that goes through how to have high- assessed on every patient and
may avoid these discussions Child-Pugh (eg, functional quality ACP and GCD conversations carried out during routine care visits
because of prognostic uncertainty assessment such as frailty, changes (eg, Serious Illness Conversation and sentinel events.
and challenges with initiating the in function over time). Guide). These courses all go through
prognosis conversation. how to discuss prognostication.
BPA-7 Goals of care discussions should be Become familiar with your locally See BPA-4: use online resources that Advance directive, relevant locale-
repeated at sentinel events to ensure accepted GCD documentation forms support high-quality ACP and GCD specific goals of care designation on
value aligned medical care. and associated resources. conversations (eg, Serious Illness every patient, reviewed at every event
Conversation Guide).
BPA-8 There are strategies available to optimize Find out your local billing numbers for Adjust clinic schedules to allow time for Preemptive scheduling of patients for
efficiencies in PC delivery by all chronic care management, ACP, and discussion with use of time-based ACP discussions with the use of ACP
members of the healthcare team. transitional care management. billing codes. codes.
BPA-9 It is useful for liver specialists and Make contact with a member of your Referral to specialist PC when symptoms Referral to specialist PC when symptoms
primary care physicians to work local specialist PC team to determine are beyond scope are beyond scope.
together with local specialist PC the process for accepting referrals on Eventually building toward integrated PC
teams to establish clear triggers and cirrhosis patients. management with a multidisciplinary

Clinical Gastroenterology and Hepatology Vol. 19, No. 4

pathways for referral. team of providers.
BPA-10 Existing hospice referrals are often made Find out your local referral criteria for If consistent with patient’s values, Patients understand overall trajectory of
late. These should ideally be made in hospice and what would be required patients have the opportunity to illness and are informed with
a timely fashion. to refer a cirrhosis patient there. receive hospice services at end of prognosis in line with prognostic
life. awareness and readiness. Timely
referral to hospice for patients with a
prognosis of 6 months or less.

NOTE. Meant for delivery of PC by clinicians who are not PC specialists and do not have routine integration of specialist PC within their outpatient or inpatient system. This approach may also be applied to graduate medical
education in gastroenterology and hepatology fellowship training. Consider exploring the Center to Advance Palliative Care website, the Shiley Institute for Palliative Care website, and the B.C. Inter-Professional Palliative
Symptom Management Guidelines for additional resources and available online modules.
ACP, advanced care planning; BPA, best practice advice; ESAS, Edmonton Symptom Assessment System; GCD, Goals of Care Designation; MELD, Model for End-Stage Liver Disease; PC, palliative care.
April 2021 Palliative Care Management in Cirrhosis 656.e3

Supplementary Table 2. Summary of Data Demonstrating Relationship Between Quality of Life and Prognosis in Patients with
Cirrhosis

Study population Population size Instrument Key findings

Retrospective analysis of patients with 405 SF-36 After confounder adjustment, the hazard
cirrhosis and severe ascites included ratio for a 10-point increase in the
in clinical trial for salvaptan physical component score was 0.83
(95% confidence interval, 0.72–0.97)
for all-cause mortality and 0.84 (95%
confidence interval, 0.71–0.99) for
cirrhosis-related deaths.94
Multicenter, prospective study of 402 Chronic Liver Disease Questionnaire Health-related quality of life (HRQoL) was
patients with cirrhosis with mean (CLDQ) and EuroQoL Group-visual independently associated with the
MELD 12 analogue scale (EQ-VAS) primary outcome of short-term
unplanned hospitalization/mortality.2
Every 1-point increase in the CLDQ and
every 10-point increase in the EQ-
VAS reduced the risk of reaching this
outcome by 30% and 13%,
respectively
Single-center prospective study of 156 Short Form Liver Disease Quality Higher baseline HRQOL predicted lower
patients awaiting liver transplant. of Life mortality (hazard ratio, 0.96; 95%
confidence interval, 0.94–0.99),
independent of MELD.95
Multicenter prospective study of patients 252 SF-36 Lower baseline Physical Component
in the Pulmonary Vascular Summary scores were associated
Complications of Liver Disease study with increased mortality rate despite
adjustments for age, gender, MELD
score, and liver transplantation (P for
the trend ¼ .0001).96

MELD, Model for End-Stage Liver Disease.