Background: Patients with end-stage liver disease awaiting liver transplantation (LT) are seriously ill and experience fluctuating periods of clinical decompensation. Discussion of a patient’s advance care planning (ACP) wishes early in their dynamic disease course is critical to providing value-aligned care while awaiting LT. We aimed to evaluate current ACP documentation and assess readiness to engage in ACP in this population.
Methods: We conducted a retrospective study of adults undergoing LT evaluation from January 2017 to June 2017 and assessed characteristics associated with documentation using logistic regression. We then administered a survey to LT candidates from March 2018 to May 2018 to determine self-reported readiness to engage in ACP (range 1 = not at all ready to 5 = very ready).
Results: Among 170 LT candidates, median (interquartile range) age was 58 (53–65), 65% were men, MELDNa was 15 (11–21), and Child–Pugh A/B/C were 33/38/29%. Nine percent reported completing ACP prior to LT evaluation, but 0% had legal ACP forms or end-of-life wishes documented in the medical record. A durable power of attorney (DPOA) was discussed with 10%. In univariable analysis, white race (OR 4.16, p = 0.03) and female sex (OR 3.06, p = 0.04) were associated with ACP documentation, but Child–Pugh score and MELDNa were not. Of the 41 LT candidates who completed the ACP survey, 93% were ready to appoint a DPOA and 85% were ready to discuss end-of-life care.
Conclusion: There is a paucity of ACP documentation and identification of DPOA among LT candidates, despite patients reporting readiness to complete ACP and appoint a DPOA. These results reveal an opportunity for tools to facilitate discussions around ACP between clinicians, patients, and their caregivers.
This study aims at evaluating the symptom response, response duration, and toxicity of single dose palliative liver radiotherapy (RT) for symptomatic HCC patients. We reviewed unresectable HCC patients treated with palliative RT in our institution. Eligible patients were unsuitable or refractory to trans-arterial chemoembolization (TACE) and stereotactic body radiotherapy (SBRT), with an index symptom of pain or abdominal discomfort. The primary outcome was the percentage of patients with clinical improvement of index symptom at 1 month. Secondary outcomes were response duration, toxicities, alpha-feto protein (AFP) response, and radiological response. Fifty-two patients were included in the study. The index symptom was pain in 34 patients (65.4%), and abdominal discomfort (34.6%) in 18 patients. At 1 month, 51.9% of patients had improvement of symptoms. Median time to symptom progression was 89 days (range: 12-392 days). Treatment was well tolerated with only 2 patients (3.8%) developing grade 3 GI toxicities. AFP response, radiological response rate, and disease control rate at 3 months were 48.6%, 15.1%, and 54.5% respectively. Half of the patients had improvement of index symptoms after receiving palliative liver RT with median response duration of 3 months. The treatment was well tolerated with minimal toxicities.
Background/Aims: We examined the quality of palliative care received by patients with decompensated cirrhosis using an explicit set of palliative care quality indicators (QIs) for patients with end-stage liver disease (PC-ESLD).
Methods: We identified patients newly diagnosed with decompensated cirrhosis at a single veterans health center and followed up them for 2 years or until death. We piloted measurement of PC-ESLD QIs in all patients confirmed to have ESLD using a chart abstraction tool.
Results: Out of 167 patients identified using at least one sampling strategy, 62 were confirmed to meet ESLD criteria with chart abstraction. Ninety-eight percent of veterans in the cohort were male, mean age at diagnosis was 61 years, and 74% were White. The overall QI pass rate was 68% (64% for information care planning QIs and 76% for supportive care QIs). Patients receiving specialty palliative care consultation were more likely to receive information care planning QIs (67% vs. 37%, p = 0.02). The best performing sampling strategy had a sensitivity of 62% and specificity of 60%.
Conclusion: Measuring the quality of palliative care for patients with ESLD is feasible in the veteran population. Our single-center data suggest that the quality of palliative care is inadequate in the veteran population with ESLD, though patients offered specialty palliative care consultation and those affected by homelessness, drug, and alcohol abuse may receive better care. Our combination of ICD-9 codes can be used to identify a cohort of patients with ESLD, though better sensitivity and specificity may be needed.
BACKGROUND: Despite significant morbidity and mortality among patients with decompensated cirrhosis (DC), reported rates of advance directive (AD) completion and goals of care discussions (GCD) between patients and providers are very low. We aimed to improve these rates by implementing a hepatologist-led advance care planning (ACP) intervention.
MEASURES: Rates of AD and GCD completion, as well as self-reported barriers to ACP.
INTERVENTION: Provider-led ACP in patients with DC without a prior documented AD.
OUTCOMES: Sixty-two patients were seen over 115 clinic visits. After the intervention, AD completion rates increased from 8 to 31% and GCD completion rates rose from 0 to 51%. Women (p=0.048) and non-married adults (p=0.01) had greater changes in AD completion compared to men and married adults, respectively. Needing more time during visits was seen as the major barrier to ACP among providers.
CONCLUSIONS/LESSONS LEARNED: Addressing provider and system-specific barriers dramatically improved documentation rates of ACP.
Advanced liver disease is increasing in mortality and morbidity worldwide, as a result of growing alcohol consumption, obesity, and viral hepatitis infection. Alongside efforts to reduce these factors, it is clear that we must identify the considerable palliative care needs of these patients in order to improve quality of life and reduce symptom burden. Our review focuses on the current state of palliative and end-of-life care for patients with advanced liver disease, the significant associated symptom burden in this disease group, identified level of involvement and potential benefits of specialist palliative care, as well as possible barriers to accessing this care. We demonstrate that although palliative care involvement varies considerably worldwide, there is much opportunity for improvement. Further research is needed to determine new interventions and models of care that may improve access for patients with liver disease, including an expansion of providers comfortable with generalist palliative care.
Context: Patients with decompensated cirrhosis have high rates of healthcare utilization at end-of-life (EOL). However, the impact of transplant candidacy on intensity of EOL care is currently unknown.
Objectives: to assess the relationship between transplant candidacy and intensity of EOL care in the last year of life in an ambulatory cohort of patients with decompensated cirrhosis.
Methods: We performed a retrospective analysis of 230 patients with decompensated cirrhosis who were evaluated for liver transplantation in a large healthcare system between 1/1/2010 and 12/31/2017 and died by 6/20/2018. We compared healthcare utilization in the last year of life and EOL care outcomes between transplant-listed (n=133) and non-listed (n=97) patients. We examined predictors of palliative and hospice care utilization using multivariate logistic regression.
Results: During the last year of life, patients had a median of 3 [IQR 2-5] hospitalizations and spent a median of 31 days [IQR 16-49] in the hospital. In all, 80% of patients died in the hospital, with 70% dying in the intensive care unit. The majority (70.0%) received a life-sustaining procedure (mechanical ventilation, renal replacement therapy, or cardiopulmonary resuscitation) during their terminal hospitalization, which did not differ between transplant-listed and non-listed patients (74.4% vs. 63.9%, p=0.09). Transplant-listed patients had lower odds of receiving specialty palliative care (OR 0.43, p=0.005). Patients with hepatocellular carcinoma had higher odds of receiving hospice care (OR 2.03, p=0.049).
Conclusion: Patients with decompensated cirrhosis had intensive healthcare utilization during their last year of life regardless of transplant candidacy. Further work is needed to optimize their EOL care, particularly for patients who are ineligible for transplantation.
Background: In 2014, the province of Alberta launched a campaign to promote public awareness of advance care planning (ACP) and its associated two-part documentation-a Goals of care designation (GCD, a medical order written by a health care practitioner detailing wishes for care) and a personal directive (PD, a document naming a surrogate decision maker). Notably, unlike the GCD, the PD can be self-initiated independent of a health practitioner.
Objective: Two years after the campaign, we aimed to assess knowledge and recall of participation in ACP among cirrhosis patients.
Design/Setting: Consecutive adult cirrhosis patients attending one of two specialty cirrhosis clinics in Edmonton, Alberta, were surveyed.
Results: Ninety-seven patients were included. Mean model for end-stage liver disease was 12. Although 97% of patients indicated it was extremely important to know the reality of their illness, only 53% understood that cirrhosis would affect their future quality of life. Thirty-three percent of patients had completed a PD and 14% had completed a GCD. Seventy-eight percent of patients believed a GCD was important to them and 85% preferred to complete it in an outpatient clinic setting. Only a minority of patients who had taken the initiative to complete a PD in the community also had a GCD.
Conclusions: Despite efforts to raise awareness of and educate Albertans about ACP, <20% of cirrhosis patients have a completed GCD. Additional strategic prioritization is required in both patients and providers to ensure that health practitioner-facilitated ACP is carried out as standard-of-care in all patients with cirrhosis.
BACKGROUND AND AIMS: Palliative care referral for end stage liver disease (ESLD) is uncommon and usually occurs late. We aimed to review the rate of early palliative care referral (EPCR) in ESLD patients, its associations, and its impacts on resource utilisation and survival.
METHODS: A retrospective review of all patients with ESLD admitted to a single hepatology unit between 2013 and 2016. Inclusion criteria for study entry were at least two admissions for decompensated liver disease within a six month period and not eligible for liver transplantation. The EPCR group was defined as those patients who received palliative care referral at least 30 days prior to mortality.
RESULTS: 74 patients were included in the study. EPCR rate was 19%. On multivariate analysis EPCR was associated with hepatocellular carcinoma (OR 4.47, 95% CI 1.02-19.5, p=0.047), and negatively associated with alcoholic liver disease (OR 0.16, 95% CI 0.032-0.88 p=0.035). There was no difference in survival based on EPCR status. Hospitalization costs were lower in the EPCR group (p=0.027). There was also a significantly lower number of endoscopies (p=0.009), and blood transfusions (p=0.001) in the EPCR group. EPCR was also associated with higher rates of outpatient palliative care and advanced care planning.
CONCLUSIONS: EPCR in ESLD was uncommon and associated with hepatocellular carcinoma and lack of alcoholic liver disease. EPCR was associated with decreased resource utilisation and further high quality studies are required to confirm the benefits of EPCR in ESLD.
Primary liver tumors are most commonly hepatocellular carcinoma and intrahepatic cholangiocarcinoma. Although surgical resection offers a chance for cure, these tumors generally present at a late, inoperable stage, necessitating an understanding of noncurative and palliative treatment options. These options include ablative therapies, including radiofrequency ablation; intra-arterial therapies, including transcatheter chemoembolization; biliary decompression; radiotherapy; systemic therapies, including traditional chemotherapeutic agents; and molecular therapies, such as sorafenib. Selection of nonoperative treatment depends on patient and tumor factors as well as institutional resources and expertise.
BACKGROUND: The Veterans Health Administration (VHA) provides care to the one of the largest cohorts of patients with advanced liver disease (ALD) in the USA.
AIMS: We performed a national survey to assess system-wide strengths and barriers to care for Veterans with ALD in this national integrated healthcare setting.
METHODS: A 52-item survey was developed to assess access and barriers to care in Veterans with ALD. The survey was distributed to all VHA medical centers in 2015. Results were analyzed using descriptive statistics.
RESULTS: One hundred and fifty-three sites responded to this survey. Multidisciplinary services were available on-site at > 80% of sites. Ninety-five percent of sites had mental health and addictions treatment available, with 14% co-locating these services within the liver clinic. Few sites (< 25%) provided pharmacologic treatment for alcohol use disorder in primary care or hepatology settings. Seventy-two percent of sites reported at least one barrier to liver-related care. Of the sites reporting at least one barrier, 53% reported barriers to liver transplant referral, citing complex processes and lack of staff/resources to coordinate referrals. Palliative care was widely available, but 61% of sites reported referring < 25% of their patients with ALD for palliative services.
CONCLUSION: Multidisciplinary services for Veterans with ALD are widely available at VHA sites, though barriers to optimal care remain.
Opportunities for improvement include the expansion of providers with hepatology expertise, integrating pharmacotherapy for alcohol use disorder into hepatology and primary care, streamlining the transplant referral process, and expanding palliative care referrals for patients with ALD.
Transplantation of organs donated after euthanasia may help alleviate the critical organ shortage. However, aside from preliminary data on lung transplantation, data on graft and patient survival following transplantation of organs donated after euthanasia are unavailable. Because donation after euthanasia entails a period of detrimental warm ischemia that hampers graft survival, similar to donation after circulatory death, results after transplantation of this type of graft need to be carefully evaluated.
OBJECTIVES: While palliative care (PC) has been shown to improve symptoms and end-of-life (EOL) care for patients with cancer, data are lacking on the patterns of use and outcomes of PC consultations for hospitalized patients with liver disease. We sought to characterize the patterns of use and outcomes of PC consultations for hospitalized patients with liver disease compared to patients with cancer.
METHODS: We conducted an observational study using data from the Palliative Care Quality Network (PCQN). The PCQN contains prospectively collected data on 135,197 hospitalized patients receiving PC consultations at 88 PCQN sites between 1/2013-12/2017. The PCQN dataset includes patient demographics, processes of care, and patient-level clinical outcomes.
RESULTS: The cohort included 44,933 patients, of whom 4,402 (9.8%) had liver disease and 40,531 (90.2%) had cancer. Patients with liver disease were younger (58.9 years vs. 65.2 years, p<0.0001) and had higher in-hospital mortality (28% vs. 16.8%, p<0.0001). Patients with liver disease were more likely to receive PC consultations to address goals of care (81.7% vs. 67.9%, p<0.0001) as opposed to pain management (10.9% vs. 34.9%, p<0.0001). Both groups had similar rates of symptom improvement and change in resuscitation preferences after PC consultation.
CONCLUSION: Hospitalized patients with liver disease were more likely to have a PC referral to address goals of care compared to those with cancer and were more likely to die in the hospital. Despite late PC consultations, patients with liver disease experienced improvement in symptoms and clarification of their goals of care, similar to those with cancer.
CONTEXT: Palliative care interventions have shown promise in improving quality of life and reducing healthcare utilization among patients with chronic organ failure.
OBJECTIVES: To evaluate the effect of a palliative care intervention for adults with end stage liver disease (ESLD).
METHODS: Randomized controlled trial of ESLD patients admitted to the hepatology service at a tertiary referral center whose attending hepatologist indicated they would not be surprised if the patient died in the following year on a standardized questionnaire. Control group patients received usual care. Intervention group patients received inpatient specialist palliative care consultations and outpatient phone follow-up by a palliative care nurse. The primary outcome was time until first readmission. Secondary outcomes included days alive outside the hospital, referral to hospice care, death, readmissions, patient quality of life, depression, anxiety, and quality of end of life care over 6 months.
RESULTS: The trial stopped early due to difficulties accruing patients. Of 293 eligible patients, only 63 patients enrolled, 31 in the intervention group and 32 in the control group. This pace of enrollment was only 25% of what the study had planned and so it was deemed infeasible to complete. Despite stopping early, intervention group patients had a lower hazard of readmission (HR 0.36, 95% CI 0.16-0.83, p=0.017) and greater odds of having more days alive outside of the hospital than control group patients (OR 3.97, 95% CI: 1.14-13.84, p=0.030). No other statistically significant differences were observed.
CONCLUSION: Logistical obstacles hindered completion of the trial as originally designed. Nevertheless, a preemptive palliative care intervention resulted in increased time to first readmission and more days alive outside of the hospital in the first six months after study entry.
Cirrhosis with decompensation has a poor prognosis, high symptom burden and causes carer stress. This pilot research in one tertiary hospital found that patients with cirrhosis with decompensation were infrequently referred to specialist palliative care. Despite this, they had a heavy symptom burden, high predicted mortality, frequent unplanned readmissions, long admissions and intensive care unit admissions. Few had adequate advance care planning.
Introduction and Aim: Utilization of palliative care services in patients dying of end-stage liver disease (ESLD) is understudied. We performed a retrospective review of palliative care services among patients with ESLD unsuitable for liver transplantation (LT) at a tertiary care center.
Material and Methods: Deceased ESLD patients considered unsuitable for LT from 2007-2012 were identified. Patients were excluded if they received a transplant, had an incomplete workup, were lost to follow up or whose condition improved so LT was not needed. Of the 1,175 patients reviewed, 116 met inclusion criteria.
Results: Forty patients (34.4%) received an inpatient palliative care (PC) consultation and forty-one patients (35.3%) were referred directly to hospice. Thirty-three patients (28.4%) transitioned to comfort measures without PC consultation (median survival < 1 day). The median interval between LT denial and PC consultation or hospice was 28 days. Median survival after PC consult or hospice referral was 15 days. In conclusion, in a single center retrospective review of ESLD patients, palliative care services, when utilized, were for care at the very end of life. Without consultation, aggressive interventions continued until hours before death. We propose that ESLD patients could benefit from PC consultation at time of LT evaluation or based on MELD scores.
BACKGROUND AND AIMS: The incidence and mortality from end-stage liver disease is increasing, with a minority eligible for liver transplantation. Ascites is the commonest complication of end-stage liver disease and large volume paracentesis (LVP) the accepted management strategy where refractory to medical treatment. In malignant ascites, permanent indwelling peritoneal catheters (PIPC) are an established palliative intervention. The aims are to describe available data using permanent indwelling peritoneal catheters in refractory ascites due to end-stage liver disease.
METHODS: Using systematic review methodology, databases were searched (MEDLINE, EMBASE, CINAHL [The Cumulative Index to Nursing and Allied Health Literature], Google Scholar and Cochrane Database of Systematic Reviews from inception-March 2018), for studies combining ascites and palliative care. Inclusion and exclusion criteria were applied to results.
RESULTS: Following initial and updated searches, 225 studies were identified for full text review, 18 were eligible for final analysis. The studies displayed heterogeneity in design, reported on different indwelling catheters and were overall of low quality. Only one pilot randomised controlled trial was identified, of PIPC versus LVP, recruiting one patient into each arm. Technical insertion success was 100%, with low rates of non-infectious complications (<12%), none life threatening. Rates of bacterial peritonitis were not unacceptably high (12.7%), considering this was an end-stage liver disease population and only a minority utilising long-term prophylactic antibiotics. Only one study attempted quality-of-life assessments; none addressed potential health economic benefits.
CONCLUSIONS: Despite lack of well-designed studies, preliminary data suggests low significant complication rates; however safety and efficacy of permanent indwelling peritoneal catheters in end-stage liver disease remains to be confirmed. Further prospective randomised controlled trials are warranted, potentially translating permanent indwelling peritoneal catheters into improved palliative care in end-stage liver disease. This article is protected by copyright. All rights reserved.
BACKGROUND: Patients with end-stage liver disease (ESLD) have high mortality, but low utilization of palliative care. A transitional care liver clinic (TCLC), bridging inpatient hepatology care to outpatient clinics, should offer the ideal setting for advance care planning (ACP).
OBJECTIVE: To examine ACP and related outcomes for TCLC patients who died within one year of the initial TCLC visit.
DESIGN: Retrospective chart review.
SETTING: Nontransplant eligible ESLD patients, seen in TCLC postdischarge from an inpatient liver unit.
MEASUREMENTS: Charts were reviewed for demographics, clinical data, ACP discussions, code status, location of death, and palliative care consultations.
RESULTS: Of the 58 patients who showed for the initial TCLC visit, 18 (31%) died within one year. Most patients were men (67%) with alcoholic cirrhosis (72%), Child-Pugh class C (55.5%) and median age of 56 years (37–72 years). There were no ACP discussions in any TCLC visits even after subsequent hospitalizations. Until their terminal hospitalization, 17 patients (94%) remained full code. Palliative care was consulted for 10 patients (56%). Despite late initiation, within two weeks of death for 6 of those 10 patients, palliative care consultation facilitated arrangements for out-of-hospital death: at home or inpatient hospice (70% vs. 12%, p = 0.01).
CONCLUSIONS: Despite a structured program for ESLD patients, there were no ACP discussions until the terminal hospitalization. These findings support the need to integrate palliative care interventions in the management of ESLD patients, especially taking advantage of postdischarge visits.
BACKGROUND: Specialty palliative care (PC) is underutilized for patients with end-stage liver disease (ESLD). We sought to examine hepatologists' and gastroenterologists' attitudes about PC for patients with ESLD.
METHODS: We conducted a cross-sectional survey of hepatologists' and gastroenterologists' who provide care to patients with ESLD recruited from the American Association for the Study of Liver Diseases membership directory. Using a questionnaire adapted from prior studies, we examined physicians' attitudes about PC and whether these attitudes varied based on patients' candidacy for liver transplantation. We identified predictors of physicians' attitudes about PC using linear regression.
RESULTS: Approximately one-third of eligible physicians (396/1236, 32%) completed the survey. Most (95%) believed that centers providing care to patients with ESLD should have PC services, and 86% trusted PC clinicians to care for their patients. Only a minority reported collaborating frequently with inpatient (32%) or outpatient (11%) PC services. Most believed that when patients hear the term PC, they feel scared (94%) and anxious (87%). Most (83%) believed that patients would think nothing more could be done for their underlying disease if a PC referral was suggested. Physicians who believed that ESLD is a terminal condition (B=1.09, p = 0.006) reported more positive attitudes about PC. Conversely, physicians with negative perceptions of PC for transplant candidates (B = -0.22, SE = 0.05, p < 0.001) reported more negative attitudes toward PC.
CONCLUSION: Although most hepatologists' and gastroenterologists' believe that patients with ESLD should have access to PC, they reported rarely collaborating with PC and had substantial concerns about patients' perceptions of PC. Interventions are needed to overcome misperceptions of PC and promote collaboration with PC clinicians for patients with ESLD.
PURPOSE OF REVIEW: End-stage liver disease (ESLD) is associated with high symptom burden, poor quality of life, and significant healthcare costs. Palliative care, which is not synonymous with hospice or end-of-life care, is a multidisciplinary model of care that focuses on patient-centered goals with the intent of improving quality of life and reducing suffering. This review will summarize current literature supporting the benefits of early integration of palliative care in patients in this population.
RECENT FINDINGS: Advance care planning (ACP) and goals of care discussions have been associated with improved quality of life, decreased anxiety, and improved satisfaction with care for both the patient and the caregiver. These discussions are beneficial to all patients with ESLD, including those listed for liver transplantation.
SUMMARY: Despite the resounding benefits of palliative care for patients with other advanced diseases, palliative care remains underutilized in liver disease. There is an urgent need for education of hepatology/transplant providers as well as development of society guidelines to help dissemination and acceptability of palliative care for patients with ESLD.
BACKGROUND & AIMS: Despite evidence for the benefits of palliative care (PC) referrals and early advance care planning (ACP) discussions for patients with chronic diseases, patients with end-stage liver disease (ESLD) often do not receive such care. We sought to examine physicians' perceptions of the barriers to PC and timely ACP discussions for patients with ESLD.
METHODS: We conducted a cross-sectional survey of hepatologists and gastroenterologists who provide care to adult patients with ESLD, recruited from the American Association for the Study of Liver Diseases 2018 membership registry. Using a questionnaire adapted from prior studies, we assessed physicians' perceptions of barriers to PC use and timely ACP discussions; 396 of 1236 eligible physicians (32%) completed the questionnaire.
RESULTS: The most commonly cited barriers to PC use were cultural factors that affect perception of PC (by 95% of respondents), unrealistic expectations from patients about their prognosis (by 93% of respondents), and competing demands for clinicians' time (by 91% of respondents). Most respondents (81%) thought that ACP discussions with patients who have ESLD typically occur too late in the course of illness. The most commonly cited barriers to timely ACP discussions were insufficient communication between clinicians and families about goals of care (by 84% of respondents) and insufficient cultural competency training about end-of-life care (81%).
CONCLUSION: There are substantial barriers to use of PC and timely discussions about ACP-most hepatologists and gastroenterologists believe that ACP occurs too late for patients with ESLD. Strategies are needed to overcome barriers and increase delivery of high-quality palliative and end-of-life care to patients with ESLD.