Improving palliative care access for patients with cirrhosis

INTRODUCTION As the number of patients with advanced liver disease (AdvLD) continues to grow, there is an increasing need for palliative care (PC) within this patient population. PC is care focused on improving symptoms and quality of life among those with serious illnesses, and it can be provided concurrently with curative therapies, including liver transplantation. However, many gaps still remain in improving PC access for patients with AdvLD. Patients with AdvLD can suffer from a high burden of both physical and psychological symptoms, such as fatigue, sleep disturbances, muscle cramps, depression, and anxiety. Additionally, patients with AdvLD often experience delayed or even absent serious illness communication about their goals of care, which may contribute to poor quality end-of-life care. Patients with AdvLD also rarely receive specialty PC services, especially those who are awaiting liver transplant, as providers often lack clear criteria for when to refer patients to specialty PC. However, while many gaps exist in improving PC access for patients with AdvLD, numerous strategies have been proposed and implemented to improve its delivery over the last several years, including models of both primary PC and specialty PC. Primary PC can be provided by any clinician and can include basic management of physical and psychological symptoms, guidance surrounding psychosocial concerns, and serious illness communication. For more complex cases, such as the management of complex symptoms or complicated patient and family distress, the integration of specialty PC (as delivered by PC clinicians) within hepatology care may further improve the quality of life of patients with AdvLD. The following review summarizes the current landscape of both primary PC and specialty PC within hepatology, including existing and proposed clinical models of care, communication resources for hepatology clinicians, proposed clinical criteria for specialty PC referral, and an overview of major ongoing clinical PC trials among patients with AdvLD. Promoting primary PC by hepatology clinicians Hepatology clinicians are well-situated to provide primary PC to patients with AdvLD, particularly with regard to basic symptom management and serious illness communication. Improving serious illness communication in hepatology care Many patients with AdvLD have indicated that they prefer to have serious illness conversations with their hepatology clinicians, given their longitudinal relationship.1 However, many hepatology clinicians may feel underprepared to carry out these conversations. Communication aids, such as written tools and pre-recorded videos, can be used to help standardize serious illness conversations with patients with AdvLD. The use of structured communication frameworks, such as the Serious Illness Conversation Guide, VitalTalk, or Best Case/Worst Case, can easily be found online and used by all clinicians (Figure 1).2,3 For a more tailored approach to serious illness communication specific for patients with AdvLD, Brisebois et al laid out a series of targeted conversation starters to initiate advance care planning (ACP) (Table 1).4 Patient-centered tools, such as video decision aids, can also facilitate early ACP discussions and can be implemented within hepatology clinics.5 As part of ACP, hepatology clinicians can also initiate the simple process of health care proxy identification for patients; this can ensure that the patient’s wishes are legally and ethically upheld by their chosen decision maker in the case of severe disease progression. Important clinical milestones that should trigger early ACP are shown in Table 2.6 Structured communication frameworks for serious illness conversations with patients with advanced liver disease. Reprinted with permission from Rogal et al.2 TABLE 1 - Recommended conversation starters for hepatology clinicians during advance care planning discussions with patients with advanced liver disease Topics Conversation starters Patient perspectives Level of detail Are you a detail‐oriented learner or do you prefer a general overview and plan?Learning style Some people are visual learners, while others process conversations best. Which learning approach suits you the best?Values and fears What is most important to you in life? What aspect of health would need to be taken from you for you to feel that living was worse than dying? Education Meeting for the first time about a new illness that you have been diagnosed with can be overwhelming. We have created educational pamphlets we can provide for you (Figure 2), which can help guide our future discussions. Our clinic communicates with your other health providers so that we all know your wishes and details regarding your health. Readiness Readiness to discuss ACP and GCD Very ill patients with cirrhosis cannot always make their own health care decisions. We like to talk about these things early on to understand what you value in case such a situation arises. How would you feel discussing how cirrhosis may affect you in the future?Readiness to choose a surrogate If you were to get very sick, is there anyone you trust to make medical decisions for you? Does this person know what is important to you? Focus of care Recently, you had a complication of cirrhosis and were quite unwell. I would like to explain how cirrhosis may affect you in the future. (Show and explain Fig. 3; see Supplemental Video S2, http://onlinelibrary.wiley.com/doi/10.1002/hep.29731/suppinfo) It is important to understand how disease‐modifying treatments and symptom-control therapies are used together during an illness. (Show and explain Fig. 4; see Supplemental Video S2 http://onlinelibrary.wiley.com/doi/10.1002/hep.29731/suppinfo) Prognosis Discuss in general terms To make sure that both you and your family are prepared, I like to address both the best‐case and worst‐case scenarios regarding how your cirrhosis may progress. Can we talk about these now? Some patients ask me how their cirrhosis will affect how long they live. Are you interested in this type of information? Review cirrhosis Disease complications The investigations that we have done show that your disease has worsened. I would like to discuss how that affects what treatments and therapies are going to help you live the best‐quality life possible.End‐of‐life wishes What would be important to you in your last months of life? Where would you prefer to die? Resources Many communities have additional support for patients with medical, social, psychological, and spiritual needs. Would you be interested in learning about some of these resources? Documentation This depends on where the patient is located. Various websites describe local and regional Goals of Care Medical Orders. In Alberta, Canada, www.conversationsmatter.ca describes local requirements. Review and compare Please tell me what you understand of your decisions with respect to your GCD. What impact do they have on your life? I want to ensure that the designation properly reflects your values and wishes. Since we last met, have you had any experiences that may change your view about living with cirrhosis? Are your wishes outlined anywhere else, such as in a Will or legal document? If so, we should look at it to ensure your wishes are consistent with your medical documents. Reprinted with permission from Brisebois et al.4Abbreviations: ACP, advance care planning; GCD, goals of care designation. TABLE 2 - Important clinical milestones that should trigger early advance care planning for patients with advanced liver disease Liver-specific factors Patient factors Major life events New liver-related complications (ascites, HE, variceal bleeding, HCC) Advanced multimorbidity Recent ICU admission New diagnosis of refractory ascites Poor performance status and/or progressive frailty Recent unplanned hospitalization for a liver-related complication New diagnosis of acute kidney injury or hepatorenal syndrome Ongoing substance use disorder Loss of a spouse or primary caregiver Recently delisted or declined for liver transplantation New comorbid diagnosis of cancer, cardiovascular disease, neurological disease Advanced age Reprinted with permission from Ufere 2021.6Abbreviation: ICU, intensive care unit. Improving symptom management in hepatology care Symptom management is a large domain of PC, and there is a growing body of literature addressing the physical and psychological symptom burden of patients with AdvLD.7 Brief targeted assessments, such as the Edmonton Symptom Assessment Scale (ESAS), can be used to screen for common symptoms, including fatigue, sleep disturbances, depression, anxiety, and more.2 The American Association for the Study of Liver Disease (AASLD) practice guidance “Palliative Care and Symptom-based Management in Decompensated Cirrhosis” provides nonpharmacologic and pharmacologic treatment recommendations for the most common symptoms in AdvLD (Table 3).2 TABLE 3 - Summary of pharmacotherapies for and side effects of the symptomatic treatment of patients with advanced liver disease Medication Side effects, cautions Nociceptive pain Acetaminophen Generally safe at low dose (2 gm daily maximum), can cause hepatic failure at high dose Topical NSAIDs Not tested in patients with cirrhosis (note that systemic NSAIDs are generally avoided in patients with cirrhosis) Lidocaine patch Site reactions (erythema), petechia, edema, pruritus, nausea, and vomiting Capsaicin cream Site reactions (burning, pain, erythema), limb pain, and hypertension Opioids HE, habit forming, respiratory depression, constipation/obstipation, and overdose; preferred are oxycodone and hydromorphone Neuropathic pain Gabapentinoids Ataxia, sedation, myoclonus/asterixis, dose adjustment in renal impairment, and withdrawal syndrome, possible increased viral infections SNRIs Discontinuation syndrome, nausea, vomiting, and sexual dysfunction Tricyclic antidepressant medications Anticholinergic, orthostasis, drowsiness, weight gain, and sexual dysfunction Muscle cramps Baclofen HE, confusion, dizziness, sedation, nausea, vomiting, and rare neurotoxicity in patients with renal failure and discontinuation syndrome Zinc Gastric irritation and rare neurological side effects Methocarbamol Hypotension, bradycardia, dyspepsia, pruritis, confusion, ataxia, HE, headache, sedation, changes in taste, seizure, vertigo, leukopenia, jaundice, and changes in vision (dose reduced in cirrhosis) Orphenadrine Palpitations, tachycardia, confusion, sedation, pruritis, constipation, nausea, vomiting, tremor, urinary retention, blurred vision, and central nervous system depression l‐carnitine Side effects common with i.v. formulation; oral formulation generally tolerated well at normal doses Vitamin E Nausea, diarrhea Taurine Nausea, dizziness, and headache BCAAs Possible nausea Depression/anxiety SNRIs Discontinuation syndrome, nausea, vomiting, sexual dysfunction, and rare hepatitis SSRIs QTc prolongation and seizure risk with citalopram, sedation with mirtazapine, nausea, vomiting, weight gain, sexual dysfunction, insomnia, and bleeding risk Benzodiazepines Physical dependence, sedation, and HE only for short‐term use at the end of life in cirrhosis Dyspnea Opioids HE, habit forming, respiratory depression, and constipation/obstipation Benzodiazepines Physical dependence, sedation, and HE only for short‐term use at the end of life in cirrhosis HEa Zinc Gastric irritation and rare neurological side effects l‐carnitine Side effects common with i.v. formulation; p.o generally tolerated well at normal doses Insomnia Melatonin Headache, fragmented sleep, and confusion Zolpidem Headache, drowsiness, dizziness, palpitations, anxiety, disorientation, and hallucination, use with caution and only in low doses for short time periods in patients with cirrhosis, particularly in the presence of HE Fatigue Modafinil Headache, abdominal pain, decreased appetite, chest pain, tachycardia, anxiety, insomnia, confusion, diarrhea, and exacerbation of psychiatric symptoms, dose reduction is generally recommended; evidence is poor Methylphenidate Not studied in cirrhosis, insomnia, headache, irritability, weight loss, anorexia, xerostomia, nausea, tachycardia, hypertension, emotional lability, dizziness, depression, anxiety, nausea, vomiting, diarrhea, abdominal pain, and possible increased infection risk; evidence is poor Pruritus Cholestyramine Edema, syncope, abdominal pain, anorexia, arthralgia, and headache (caution in renal impairment) Antihistamines Sedation, dizziness, HE, rare QT prolongation, hallucination, and headache Nausea, vomiting, and dyspepsia Ondansetron QTc prolongation, headache, constipation Metoclopramide QTc prolongation, drowsiness, fatigue, restlessness, dystonic reaction (age-related, but can be severe), arrhythmia, hypotension, and caution in renal impairment Haloperidol Increased risk of death in older adults with dementia, extrapyramidal symptoms (eg, dystonia, akathisia, and tardive dyskinesia), aspiration risk, cytopenias, hyperprolactinemia, neuroleptic malignant syndrome, metabolic derangements, QTc prolongation, seizures, and sexual dysfunction Medical cannabinoids Psychosis, encephalopathy, ascites, and hyperemesis Antihistamines Sedation, dizziness, HE, rare QTc prolongation, hallucination, and headache Proton pump inhibitors Increased infection risk in cirrhosis, abdominal pain, diarrhea, nausea, dizziness, headache, and rash H2 antagonists Dizziness, delirium, confusion, agitation, headache, and change in bowel habits Erectile dysfunction Tadalafil Dyspepsia and headache, caution if encephalopathy or low blood pressure Note: Reprinted with permission from Rogal et al.2Lexicomp.com was used for drug information.aAlternatives to standard treatments.Abbreviations: BCAA, branched chain amino acids; SNRI, serotonin and norepinephrine reuptake inhibitor; SSRI, selective serotonin reuptake inhibitor. Models of primary PC in hepatology The PAL-Liver study is an ongoing, large, multi-center comparative effectiveness trial comparing primary PC provided by hepatologists to PC provided by specialty PC clinicians to patients with AdvLD over the course of 3 monthly sessions; quality of life is the primary outcome.8 The hepatologists providing primary PC were trained through a set of electronic modules and were provided with standardized checklists addressing PC topics for patient visits; simple tools such as these can be used on a larger scale and implemented into routine training for all hepatology providers. Integration of specialty PC in hepatology care Though all hepatology providers can and should provide primary PC to their patients with AdvLD, some patients have such high palliative care needs that they may benefit from additional support of specialty PC services. Specific patient populations who may benefit from specialty PC involvement include those awaiting liver transplant and those with HCC. Increasing education on PC and addressing misperceptions of specialty PC Misperceptions continue to persist among hepatology clinicians surrounding specialty PC, such as the belief that PC is equivalent to end-of-life care and the fear that patients, particularly those listed for liver transplant, may feel abandoned or depressed if their hepatologists referred them to PC.9 However, in a qualitative study of 15 patients with AdvLD and 14 family caregivers, almost all participants believed PC should be integrated early into the care of patients with AdvLD after the participants were given a standard description of PC from the center to advance palliative care: “Palliative care is specialized medical care for people facing a serious illness that focuses on providing patients with relief from symptoms and stress of a serious illness with the goal of improving quality of life for the patient and the family. Palliative care is appropriate for patients at any age and at any stage in a serious illness and can be provided along with curative treatment”.10 Lastly, shifts in language, such as using the term “supportive care” rather than “palliative care,” have been suggested to increase the acceptance of specialty PC among patients and their providers.11 Triggers for PC referral for patients with AdvLD Various clinical and prognostic criteria have been proposed and implemented to help identify which patients with AdvLD should be referred to specialty PC due to the high predicted risk of 1-year mortality (Figure 2).12 Clinical criteria or symptom screening tools, such as the Functional Assessment of Chronic Illness Therapy-Palliative Care or the Edmonton Symptom Assessment Scales, can help to identify patients with high palliative care needs who could benefit from early PC involvement.2 In 1 single-site retrospective study, the use of standardized PC consultation criteria (based on prognostic factors associated with > 80% 1-year mortality) for hospitalized patients with AdvLD increased the rate of consultation from 8% to 33%.13FIGURE 2: Clinical and prognostic criteria that should trigger palliative care referral for patients with advanced liver disease. Reprinted with permission from Mazzarelli et al.12 Abbreviations: ACLF, acute-on-chronic liver failure; MELD, Model for End-Stage Liver Disease.Models of integrated specialty PC with inpatient hepatology care A few studies have investigated the outcomes of standardized PC consultations for hospitalized patients with AdvLD. In a single-site pre-post study, there was an increase in GOC discussions and rates of “do not resuscitate” code status as well as a decrease in length of stay (without a decrease in mortality rates) after the implementation of specialty PC intervention for patients with AdvLD in a surgical intensive care unit.14 LiverPAL, an ongoing single-center randomized controlled trial, is exploring the effects of standardized, early involvement of specialty PC for hospitalized patients with AdvLD; primary and secondary outcomes include quality of life, symptom management, and end-of-life care communication.11 Models of integrated specialty PC in outpatient hepatology care In other chronic diseases, such as cancer and heart failure, outpatient models of integrated specialty PC allow patients to develop longitudinal support early into their disease course. In the COMPASS pilot randomized clinical trial, patients with AdvLD were randomized to receive both inpatient specialty PC with outpatient, longitudinal follow-up or usual care.15 Unfortunately, the trial was stopped early due to low patient accrual; however, the preliminary data suggested the intervention group had less days in the hospital, suggesting the beneficial effects of involving PC both in the inpatient and outpatient setting. One arm of the ongoing PAL-Liver trial is assessing the efficacy of providing standardized specialty PC to with Models of integrated specialty PC in outpatient liver transplantation care studies have the integration of specialty PC into liver transplantation care. In 1 single-center study, patients liver transplant who PC consultation on the as their transplant had decreased rates of depression and in symptom single-center pilot study investigated the of care for liver transplant of a Models of integrated specialty PC for patients with et al a pilot randomized controlled trial in which patients with were randomized to receive a PC which 2 outpatient PC or usual care. Patients randomized to the PC intervention arm in both symptom burden and quality of As the of palliative hepatology continues to clinicians will need more specific and standardized guidance for the implementation of PC such as that can be used will need to continue to in the training of hepatology clinicians in providing primary PC to ensure access to PC to the growing of patients with this AdvLD. is to develop PC delivery models in hepatology, including PC within hepatology specialty care as well as and PC for patients with AdvLD (Table Lastly, and most studies are ongoing, which will provide the evidence for models of primary and specialty PC for patients with TABLE - Palliative care delivery models in hepatology Model PC PC providers PC of care is easily for more planning and and consistent referral for education and in PC. and to be to these for additional support in the may be of the high of patients but providers in these PC PC PC providers within specialty care (eg, care access to PC within routine PC and specialty of PC referral among providers and for integration of PC within hepatology of support and other clinical may be of and as the needs of patients the PC Patients may be of of time in the clinic and may not be to additional may more PC consultation PC during hospitalization health care use and develop care of it is for the patients to receive the of of number of PC providers for the high needs of inpatient PC PC in to PC in with care A inpatient can help together the resources to the for the as this can help and health care and to such a by the PC Ongoing to given the will care for a ill population. PC of to PC PC providers can care to patients of the or to to for additional Video provides a into the and of patients, PC more is and on and is to those with access to the PC PC providers and PC at patient’s at is while PC Increased with and and Note: Reprinted with permission from et medical PC, palliative

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