BACKGROUND: A previous study found that care provided by a nurse practitioner (NP) during oncological or palliative care was highly regarded. These patients, however, were considered a special population due to suffering from life-threatening illnesses. It remains unclear whether the results are transferable to patients with chronic conditions. Patient's perceptions of the quality of NP care have reflected that it equals or exceeds that of physicians, but the root causes of these remarks remain unclear.
PURPOSE: To describe the difference in perception of NP care by patients suffering from chronic heart failure (CHF) or inflammatory bowel disease (IBD) in contrast with NP oncological or palliative care.
METHODOLOGICAL ORIENTATION: A qualitative study from a phenomenological perspective was conducted. Data were analyzed using Colaizzi's seven-step method and the Metaphor Identification Procedure.
SAMPLE: In 2018 and 2019, 16 outpatients receiving CHF or IBD care were interviewed.
CONCLUSIONS: Although chronic and life-threatening diseases may differentiate patients' perspectives, it can be generally stated that patients value NPs to be reliable, helpful, and empathic. Patients feel empowered, at peace and in control thanks to integrated care by dedicated experts.
IMPLICATIONS FOR PRACTICE: Outpatients highly appreciate the "communicator role" and "skilled companionship" performed by NPs, to fulfill their needs for attention to the "complete picture." Therefore, further consideration of these competencies is recommended.
Hepatocellular carcinoma is a common cancer with a poor prognosis, associated with high economic costs and a significant burden of disease. While it is often asymptomatic in the early stages, patients may experience great discomfort from advanced disease, treatment adverse effects or decompensation of underlying cirrhosis. Palliative care has the potential to markedly improve quality of life, physical and psychological symptoms in patients with end-stage liver disease, and has been shown to prolong survival in some non-hepatocellular carcinoma malignancies. However, this service is underutilized in hepatocellular carcinoma and referrals are frequently late due to factors such as stigmatization, inadequate resources, lack of education for non-palliative care physicians and inadequate modelling for integration of palliative and supportive care within liver disease services. In the future, education workshops, population-based awareness campaigns, increased funding and improved models of care, may improve the uptake of palliative care and subsequently optimize patient care, particularly towards the end of life.
Background: Palliative care (PC) and hospice care are underutilized for patients with end-stage liver disease, but factors associated with these patterns of utilization are not well understood.
Objective: We examined patient-level factors associated with both PC and hospice referrals in patients with decompensated cirrhosis (DC).
Design: Retrospective cohort study.
Setting/Subjects: Patients with DC hospitalized at a single tertiary center and followed for one year.
Measurements: We assessed PC and hospice referrals during follow-up and examined patient-level factors associated with the receipt of PC and/or hospice, as well as associated clinical outcomes. We also examined late referrals (within one week of death).
Results: Of 397 patients, 61 (15.4%) were referred to PC, 71 (17.9%) were referred to hospice, and 99 (24.9%) were referred to PC and/or hospice. Two hundred patients (50.4%) died during the one-year follow-up. In multivariable logistic regression, referral to PC was associated with increased comorbidity burden, ascites, increased MELD (Model for End-Stage Liver Disease)-Na score, lack of listing for liver transplant, and unmarried status. Hospice referral was associated with increased comorbidities, portal vein thrombosis, and hepatocellular carcinoma. PC referrals were late in 68.5% of cases, and hospice referrals were late in 62.7%. Late PC referrals were associated with younger age and married status. Late hospice referrals were associated with younger age and recent alcohol use.
Conclusions: PC and hospice is underutilized in patients with DC, and most referrals are late. Patient-level factors associated with these referrals differ between PC and hospice.
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.
BACKGROUND/AIMS: Gastroenteropancreatic neuroendocrine tumors are rarely seen and have heterogeneous clinical outcomes. Mostly half of the patients had metastatic disease at presentation. Palliative resection of primary site in metastatic disease is still controversial. The aim of this study was to find out the influence of resection of primary tumor site on progression-free survival and overall survival in metastatic non-functioning gastroenteropancreatic neuroendocrine tumors. The secondary end point is to determine the prognostic factors influencing the survivals.
MATERIALS AND METHODS: This study was conducted at a single medical oncology center, Antalya Education and Research Hospital. Patients who had non-functioning metastatic gastroenteropancreatic neuroendocrine tumors with primary site resected or unresected were compared retrospectively. Resection of metastases was excluded.
RESULTS: Fifty-three patients were included in the study and 29 patients had primary tumor resection. The primary site resected group had favorable outcomes with the overall survival (median unreached) compared to the median overall survival of 30 months in the unresected group (p=0.001). Median progression-free survival was also better in the primary site resected group than the unresected group (60 months vs. 14 months, respectively) (p=0.013). In multivariate analysis, unresected primary site and high-grade tumors were found to be independent prognostic factors on low survivals (Hazard ratio (HR): 4.6; 95% CI: 1.21-17.47 and HR: 10.1; 95% CI: 1.15-88.84, respectively). Age (p=0.131), gender (p=0.051), chromogranin A level (p=0.104), Ki-67 index (p=0.550), tumor size (p=0.623), and primary tumor area (p=0.154) did not influence the overall survival.
CONCLUSION: Gastroenteropancreatic neuroendocrine tumors with primary site resected had improved survivals when compared to the unresected group.
Les maladies inflammatoires chroniques intestinales (MICI) sont
encore peu connues du grand public. Invalidantes, elles touchent
essentiellement le tube digestif et se présentent sous deux pathologies : la maladie de Crohn et la rectocolite hémorragique.
Tout d’abord, je souhaite remercier l’ASP fondatrice de son invitation
car il est important de faire témoigner les malades.
Je suis atteint d’une rectocolite hémorragique depuis l’âge de 14 ans
et ai ensuite dû faire face à trois cancers : côlon, rectum, vésicule
biliaire. J’ai été "iléostomisé" et remis en continuité un an après
et « urostomisé » avec deux sondes bilatérales.
J’ai subi des radiothérapies, chimiothérapies. Je vais vous décrire
comment j’ai vécu ma maladie et comment je suis devenu patient
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.
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.
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.
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.
End stage liver disease (ESLD) is increasing in incidence, resulting in a greater burden on the healthcare system, which is estimated to cost over 2 billion United States dollars each year.(3) Unfortunately, many of these expenditures fail to meaningfully improve or prolong life for patients.(4) In addition to these costs, patients with ESLD suffer a high burden of symptoms and invasive procedures, even when death may be imminent.
Aim: Pancreas cancer continues to carry a poor prognosis. Hospitalized patients with advanced chronic pancreatic illnesses increasingly receive palliative care due to its perceived clinical benefits. Meanwhile, a growing proportion of elderly patients are reportedly receiving life-sustaining procedures. Temporal trends in the utilization of life-sustaining procedures and palliative care consultation among dying patients with advanced chronic pancreatic illnesses in US hospitals were examined.
Methods and Materials: A serial, cross-sectional analysis was carried out using the National Inpatient Sample Database. Decedents 18 years and older with a principal diagnosis of pancreas cancer or other advanced chronic pancreatic illnesses from 2005 through 2014. The compound annual growth rates (CAGRs) and Cochrane-Armitage correction of 2 statistic were used. The receipt of life-sustaining systemic procedures, intra-abdominal local procedures and surgeries, and palliative care consultation were examined. Multilevel multivariate logistic regressions were performed to examine the association of various procedures with the utilization of palliative care consultation.
Results: Among 77 394 183 hospitalizations, 29 515 patients were examined. The CAGRs of systemic procedures, intra-abdominal procedures, surgeries, and palliative care were -4.19% (P = .008), 2.17%, -1.40%, and 14.03% (P < .001), respectively. The receipt of systemic procedures (odds ratio [OR] = 2.40, 95% confidence interval [CI], 2.08-2.74), local intra-abdominal procedures (OR = 1.46, 95% CI, 1.27-1.70), and surgeries (OR = 2.51, 95% CI, 2.07-3.05) was associated with palliative care consultation (Ps < .001).
Conclusions:Among adults with pancreatic cancer or other advanced chronic pancreatic illnesses in the US hospitals from 2005 to 2014, the utilization of life-sustaining systemic procedures decreased while the prevalence of palliative care consultation increased.