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Aims: Palliative care integration improves quality of life among patients with lung cancer and their families. Despite these benefits, significant barriers persist and patients do not receive timely integration. This study sought to identify facilitators of and barriers to integration in lung cancer care. Materials & methods: Semistructured qualitative interviews were conducted with palliative care and lung cancer clinicians and analyzed using traditional content analysis. 23 clinicians were interviewed from geographically dispersed hospitals within a national healthcare system. Results: Palliative care integration improved over time, enhanced by several facilitators stratified at four levels (patient/clinician/hospital/organization). Most important among these was multidisciplinary care delivered in outpatient settings, fostering trust and relationships among clinicians which were pivotal to successful integration. Workforce shortages and limited use of primary palliative care among lung cancer clinicians need to be addressed for continued growth in the field. Conclusion: Relationships among clinicians are crucial to successful palliative care integration in lung cancer care.

Context Palliative care (PC) is associated with improved quality of life, survival, and decreased healthcare use at the end of life among lung cancer patients. However, the specific elements of palliative care that may contribute to these benefits are unclear. Objectives To evaluate the associations of PC and its setting of delivery with prescriptions of symptom management medications, advance care planning (ACP), hospice enrollment, and home health care (HHC) receipt. Methods Retrospective, cohort study of patients with advanced stage (IIIB/IV) lung cancer in the Veterans Health Administration (VA) diagnosed from 2007-2013; with follow-up through 2017. Propensity score methods were used with inverse probability of treatment weighting and logistic regression modeling, adjusting for patient and tumor characteristics. Results Among 23 142 patients, 57% received PC. Compared to non-receipt of PC, PC in any setting (inpatient or outpatient) was associated with increased prescriptions of pain medications (Adjusted Odds Ratio (aOR) = 1.63, 95% CI: 1.45-1.83), constipation regimen with pain medications (aOR = 2.04, 95% CI: 1.63-2.54), and antidepressants (aOR = 1.78, 95% CI: 1.52-2.09). PC was also associated with increased ACP (aOR = 1.52, 95% CI: 1.37-1.67) and hospice enrollment (aOR = 1.39, 95% CI:1.31-1.47), and decreased HHC (aOR = 0.79, 95% CI: 0.70-.90) compared to non-receipt of PC. Receipt of PC in outpatient settings was associated with increased prescriptions of pain medications (aOR = 2.54, 95% CI: 2.13-3.04) and antidepressants (aOR = 1.76, 95% CI: 1.46-2.12), and hospice enrollment (aOR = 2.09, 95% CI: 1.90-2.31) compared to receipt of PC in inpatient settings. Conclusions PC is associated with increased use of symptom management medications, ACP, and hospice enrollment, especially when delivered in outpatient settings. These elements of care elucidate potential mechanisms for improved outcomes associated with PC and provide a framework for a primary palliative care approach among non-palliative care clinicians.

A cancer diagnosis carries a significant economic burden. Yet little is known about perceived financial security on the health of couples with a partner diagnosed with cancer.The current study explored perceived financial security in young-midlife couples.The study included 49 couples (aged 27-58 years) 1 to 3 years after diagnosis. Multilevel modeling was used to examine the association of perceived financial security on physical and mental health of couples controlling for interdependent data; hierarchical linear regression was used to examine perceived financial security on survivor symptoms and partner care strain.Mean age of survivors was 43.5 (±9.0) years. Most survivors were female (69%) and 2.2 (±0.6) years after diagnosis. Lower levels of perceived financial security were significantly associated with poorer physical (P.001) and mental (P.05) health status for survivors, controlling for age, sex, education, and years since diagnosis; there were no significant associations with partner health status. Lower levels of perceived financial security were significantly associated with higher survivor pain severity (P.001), pain interference (P.001), and fatigue (P.01); there was no significant association with partner care strain.Financial security plays a role on the physical and mental health of couples after diagnosis.Screening for financial hardship at diagnosis and posttreatment can identify couples at high risk and in need of additional resources and counseling. Greater assessment and reporting of financial security in studies of families surviving cancer are needed to understand the impact on health outcomes.

Introduction Pancreatic ductal adenocarcinoma cancer (PDAC) remains a challenging diagnosis. The likelihood of long-term survival is limited even for patients who undergo maximal medical therapy with systemic chemotherapy and surgical resection. Within this intensive process, there remains limited understanding of patients' pretreatment expectations of PDAC treatment experience and their decision-making process. Methods PDAC patients who underwent chemotherapy and surgical resection were retrospectively identified. Semi-structured phone interviews were completed regarding patient experience with therapy. Qualitative descriptive analysis was performed, and categories, subcategories, and themes were determined. Results Fifteen patients were interviewed regarding their experience with PDAC treatment. An overall personal disease trajectory experience was identified with two phases. The first phase encompassed the patients' treatment. In this phase, patients expressed a choice, non-choice regarding therapy decisions, viewing therapy as the only option. Misconceptions about the roles of therapies and expected experience of treatment were observed. The second phase focused on life after therapy. Patients reported persistent physical changes secondary to therapy. An overall realistic understanding of the patient's limited prognosis was observed, with patients expressing appreciation of the life time gained as a benefit of treatment. Conclusions There remains critical areas for improvement in communication and care of patients with PDAC. Physicians should continue to ensure that patient's goals and wishes are respected when making treatment decisions and confirm that patients understand the roles and limitations of prescribed therapies. Additionally, patients continue to have significant physical changes post treatment which should be assessed for and managed as appropriate to maintain quality of life.

The informal caregiver plays a critical role in supporting patients with various end-stage diseases throughout the solid organ transplantation journey. Caregiver responsibilities include assistance with activities of daily living, medication management, implementation of highly specialized treatments, transportation to appointments and treatments, and health care coordination and navigation. The demanding nature of these tasks has profound impacts across multiple domains of the caregiver's life: physical, psychological, financial, logistical, and social. Few interventions targeting caregiver burden have been empirically evaluated, with the majority focused on education or mindfulness-based stress reduction techniques. Further research is urgently needed to develop and evaluate interventions to improve caregiver burden and outcomes for the patient-caregiver dyad.

BACKGROUND Nursing retention is a concern for healthcare systems, hospital administrators, and nurses who have spent considerable time and money to achieve educational goals. Nearly, 33% of nurses will drop out in the 2 years practice. Those who stay in practice face an increased risk of suicide when compared the general population. AIMS To examine the relationship between nurse sociodemographic data and unique study variables with potential morally injurious outcomes (i.e., dropping out variables: changing jobs, intention to leave the profession, or suicidal thinking). METHODS A descriptive, correlational study design was used to characterize the relationship between the sociodemographic data of 216 registered nurses (RNs) and patient safety and the suicidal behavioral questionnaire. RESULTS RNs involved in a patient safety incident (PSI) considered changing jobs when the degree of harm was death (p

Individuals with advanced liver disease (AdvLD), such as decompensated cirrhosis (DC) and hepatocellular carcinoma (HCC), have significant palliative needs. However, little research is available to guide health care providers on how to improve key domains related to palliative care (PC). We sought to identify priority areas for future research in PC by performing a comprehensive literature review and conducting iterative expert panel discussions. We conducted a literature review using search terms related to AdvLD and key PC domains. Individual reviews of these domains were performed, followed by iterative discussions by a panel consisting of experts from multiple disciplines, including hepatology, specialty PC, and nursing. Based on these discussions, priority areas for research were identified. We identified critical gaps in the available research related to PC and AdvLD. We developed and shared five key priority questions incorporating domains related to PC. Conclusion: Future research endeavors focused on improving PC in AdvLD should consider addressing the five key priorities areas identified from literature reviews and expert panel discussions., The FIB‐4 index, a simple tool of routine clinical data, was found to independently be associated with need for mechanical ventilation in patients with COVID‐19.

Adults with hepatocellular carcinoma (HCC) have a high symptom burden. Their quality of life (QOL) has been shown to be significantly impacted by both the disease and its treatment, adding to the high symptom burden that these patients experience. The primary aims of this paper are as follows: (1) to identify how QOL is being defined in HCC literature and (2) to identify how QOL is being measured in the HCC literature using Ferrell’s model of QOL. A systematic review was completed of relevant studies published after 2014, using PubMed, CINHAL, and PsycInfo. Relevant studies were reviewed by 2 reviewers using PRISMA guidelines. From a total of 1312 papers obtained in the initial database search, 30 met inclusion criteria and are included in this review. From the included articles, 10% included a definition of QOL and 3% addressed the spiritual domain of QOL. Majority of study participants were in the early stage of HCC, though the majority of adults with HCC are diagnosed in the advanced stage. Only 3% of included studies included greater than 22% population of advanced stage of HCC. The results of this systematic review demonstrate the need for future research into QOL in the advanced stage of QOL. It also identified gap in the literature concerning the definition of QOL in HCC and the spiritual domain of QOL in HCC.

The treatment of the hepatitis C virus has been revolutionized by the discovery of direct-acting antiviral medications, which offer more effective treatment with fewer potential side effects. Few studies have examined changes in patient-reported outcomes in individuals undergoing treatment for the hepatitis C virus in the immediate time period after the first treatment (within 1 month). This study is one of the first to use quantitative and qualitative methods to investigate changes in quality of life, patient activation, and symptom burden in adults undergoing treatment for hepatitis C virus with direct-acting antiviral medications. Seventy-three patients were followed in a prospective, longitudinal mixed-methods design. Changes pre and posttreatment in quality of life, patient activation, and symptom burden were very small in magnitude when looking across the entire sample. However, patients with lower self-reported health at baseline reported improved physical and psychological functioning 1-month posttreatment. Patients with higher self-reported health at baseline reported decreased general health posttreatment, although these effects were small. Qualitative results suggested that most patients found symptoms to be manageable despite experiencing both psychological and physical symptoms during treatment. We also found that 25% of patients had low levels of patient activation and may lack the basic knowledge and confidence to be an active participant in their health care. These findings suggest that patients may benefit from tailored information based on current health status about what to expect during and immediately after beginning direct-acting antiviral medication treatment.

Background To date, there has been no published work towards understanding or classifying patient safety incidents (PSIs) or their aftermath as potential morally injurious experiences (pMIEs). A morally injurious experience is one that violates deeply held moral values and beliefs, and can put an individual at risk for burnout, post-traumatic stress disorder, and other trauma-related problems. This can also set the stage for moral injury, which can occur when there has been a betrayal of what is right by someone in a position of legitimate authority, or by one's self, in a high-stakes situation. Objective The objective of this review of nurse second victim literature is to describe symptoms of moral injury empirically observed in nurses in the aftermath of a PSI. Methods A critical review using a SALSA (search, appraisal, synthesis, analysis) method commenced with a search of electronic data base-indexed original evidence between 1980 and December 2018, focusing on registered nurses involved with a PSI. Results The nurse empirical literature reviewed included qualitative (n = 10), quantitative (n = 7), and mixed-methods (n = 4) studies (total n = 21). Core moral injury symptoms included guilt (67%), shame (71%), spiritual-existential crisis (9%), and loss of trust (52%). Secondary symptoms of moral injury included depression (33%), anxiety (57%), anger (71%), self-harm, (19%), and social problems (48%). Implications Moral injury better describes what historically has been called the nurse second victim phenomenon. Through identification of pMIEs and symptoms of moral injury, nurses and organizations can be empowered to advance training and intervention programs addressing pMIEs that affect nurses' safety and retention in the aftermath of a PSI. Clinical relevance By describing the experiences associated with a PSI as potentially morally injurious, we set the stage to describe the potential consequences associated with the aftermath of the PSI. Furthermore, this language avoids victimizing those involved by more accurately reflecting the pMIEs of the aftermath.

Cancer survivors are now living longer giving rise to a new concept—chronic cancer as survivors continue to face long-term consequences of cancer and its treatment. For these survivors, QOL becomes a vital consideration in understanding their survivorship and the long-term impact of cancer and its treatment. The primary aim of this review is to describe QOL in cancer survivors two or more years from diagnosis. A meta-analysis was completed of relevant studies assessing QOL in long-term cancer survivorship using PubMed, CINHAL, and PsycINFO. A total of 64 articles met inclusion criteria and included in the analysis. Standardized effect sizes and errors were calculated using previously published standard QOL pass rates to compare QOL across measurement tools and calculate cumulative effect sizes (CES). Fixed-effect or random-effects models were used based on the presence of significant heterogeneity of ≤ 0.10. Physical health (CES = − 0.894; CI, − 1.472, − 0.316), role-physical health (CES = − 2.039; CI, − 2.643, − 1.435), and mental health (CES = − 0.870; CI, − 1.447, − 0.292) had large, negative cumulative effect sizes signifying worse QOL compared with acceptable QOL rates. Tested moderators, cancer type, average age, country of origin, time since diagnosis, or decade of diagnosis, were not significant to explain heterogeneity between included studies. QOL is significantly impacted 2 to 26 years after cancer diagnosis. More research is needed to determine possible moderators of QOL in long-term cancer survivors. QOL continues to be significantly impacted in long-term cancer survivorship. More research is needed to understand the impact of these findings on care needs for survivors with chronic cancer.

Background Studies assessing multiple symptoms and the distress of these symptoms in decompensated cirrhosis are lacking. Aims The aims of this study were to assess symptom prevalence and distress among patients with decompensated cirrhosis and to describe medical management of the most prevalent symptoms. Methods Patients were recruited from hepatology clinics within two health-care systems. Eligibility criteria included a model for end-stage liver disease (MELD-Na) score ≥15. Patients completed the Condensed Memorial Symptom Assessment Scale and Patient Health Questionnaire. Comparative statistics were used to analyze the cross-sectional survey data. Results Of the sample (n = 146), most patients were Child-Turcotte-Pugh (CTP) class B (49.7%) and C (46.2%). Mean age was 56.5 years, 65.1% were male, and 88.4% were white. Average MELD-Na score was 19.1 ± 4.5. The most prevalent symptoms were lack of energy and feeling drowsy while the most distressing were lack of energy and difficulty sleeping. Only 24 patients (16.4%) were treated for their difficulty sleeping with sleep medication. Importantly, those prescribed sleep medications had similar distress (3.9 ± 1.2 vs. 3.5 ± 1.2, p = 0.229) compared with patients not prescribed sleep medications. Opioids were prescribed to 57 (39.0%) patients; antidepressants to 34 (23.3%). Forty patients (27.4%) who reported moderate or greater depression were not prescribed an antidepressant. Conclusions The study highlights the multiple symptoms and distress experienced by patients with decompensated cirrhosis, and the need for improved medical management by health-care providers through enhanced awareness and attention to these complex symptoms. Future research should focus on improvements in symptom management.

Patients with decompensated liver disease have been categorized by disease severity. This analysis sought to classify patients with end-stage liver disease based on symptoms rather than disease state and to identify distinct severity classes of physical and psychological symptoms.Patients with a model for end-stage liver disease-sodium score of 15 or higher were recruited from liver clinics in 2 health care organizations. They completed the Condensed Memorial Symptom Assessment Scale, Revised Ways of Coping Checklist, Patient Health Questionnaire, Life Orientation Test-Revised, and the Short-Form Health Survey. Cross-sectional data were analyzed using latent class mixture modeling.The sample (N = 191; age, 56.6 ± 11.1 y; 33.5% ETOH; 28.3% nonalcoholic fatty liver disease; 13.1% autoimmune/primary biliary cholangitis/primary sclerosing cholangitis) was predominantly male (64.2%), Child-Turcotte-Pugh class C (49.5%), with an average model for end-stage liver disease-sodium score of 18.7 ± 4.9. Three distinct classes of symptoms were identified, as follows: mild (26.7%), moderate (41.4%), or severe (31.9%) symptoms. Symptom classes were independent of disease severity and demographic characteristics, except age. All Condensed Memorial Symptom Assessment Scale symptoms and Patient Health Questionnaire scores were significantly different across the 3 classes (Plt; .05). The symptom classes also differed significantly in physical and mental quality of life, optimism, and avoidance coping behaviors (all Plt; .001).Patient-reported symptom severity occurred independent of disease severity, contrary to common assumptions. Focusing on the moderate and severe symptom classes as well as patient history of end-stage liver disease complications may enhance providers' ability to improve symptom management for this population.

The uncertain trajectory of end-stage liver disease (ESLD) leaves patients and their informal care-partners to face psychological, physical, social, and financial burdens, complicating their relationship. Knowledge is lacking on how living with ESLD affects patients and informal care-partners. The study purpose was to compare how ESLD affects relationships between younger and older patient-care-partner dyads. Patients with ESLD and informal care-partners were recruited through liver clinics at two hospital settings. They completed questionnaires including two open-ended questions about how ESLD affected their relationship (R01NR016017, NINR/NIH). Patient eligibility criteria: age >21 and MELD-Na score >15. Care-partner eligibility criteria: age ≥18 and identified as patient’s primary support. Conventional content and qualitative dyadic analysis were used to analyze written responses to the two questions. Data were available for 140 patient-care-partner dyads. Patients averaged 57 years old (range, 23-83 years; 69% were male; 31% with ETOH as primary etiology). Care partners averaged 57.5 years old (range, 19-85 years; 74% were female). Older dyads were more likely to report having a closer relationship, although tempered by uncertainty and symptoms limiting activities. Younger dyads emphasized managing symptoms, financial stress, caregiving burden, and lack of intimacy among spousal/partners. Diverging and overlapping themes within dyads reflected caregiving challenges, relationship strain, and support from other relationships. Clinicians should provide information and identify helpful resources that support the patient- care-partner dyad and their ability to manage ESLD. Future longitudinal dyadic studies should examine the patient-care-partner relationship at different points in the disease progression to develop interventions that help living with ESLD.

In this study, we assessed the influences of change in moderate-to-vigorous physical activity (MVPA)/sedentary time (ST) of caregivers participating in a commercial weight-loss program on their children’s change in MVPA/ST. Data from 29 caregivers and their children were collected over 8 weeks. We used multivariable linear regression to assess associations of changes in caregiver’s percent of time spent in MVPA/ST and changes in their child’s percent of time spent in MVPA/ST. For caregivers that decreased body mass index (BMI) over 8 weeks, changes in caregivers’ MVPA was strongly associated with the change in children’s MVPA (β = 2.61 [95% CI: 0.45, 4.77]) compared to caregivers who maintained/increased BMI (β = 0.24 [–2.16, 2.64]). Changes in caregivers’ ST was strongly associated with changes in children’s ST (β = 2.42 [1.02, 3.81]) compared to caregivers who maintained/increased BMI (β = 0.35 [–0.45, 1.14]). Findings reinforce encouraging caregivers to enroll in weight-loss programs for the benefit of their children as well as for themselves.

OBJECTIVES The purpose of this study was to investigate the relationship between personality traits (perfectionism and neuroticism) and the traumatic outcomes of reexperiencing, avoidance, and alcohol abuse severity of registered nurses (RNs) who have been involved with a patient safety incident (PSI). We hypothesized that higher scores for perfectionism and neuroticism would predict higher reexperiencing and avoidance symptoms in RNs in the aftermath of a PSI. Also, RNs with higher perfectionism and neuroticism sum scores would be more likely to abuse alcohol. METHODS A descriptive, correlational study design was used to characterize the relationships of personality traits and potential traumatic outcomes of RNs in the aftermath of a PSI. The Almost Perfect Scale-Revised, Neuroticism Scale, Posttraumatic Stress Disorder Checklist for Diagnostic and Statistical Manual of Mental Disorders, and Alcohol Use Disorders Identification Test-Consumption measures were administered to RNs licensed in Oregon and New York. RESULTS Perfectionist-discrepancy personality traits (P < 0.01) were the strongest predictors for reexperiencing symptoms and neuroticism (P < 0.05) was the strongest predictor for avoidance symptoms, when controlling for sociodemographics and experience. We found a negative linear relationship between perfectionism-order and alcohol abuse severity (β = -0.15, P < 0.01; confidence interval, -0.24 to 0.05). CONCLUSIONS This study demonstrated a statistically significant relationship between perfectionism-discrepancy and reexperiencing as well as between neuroticism and reexperiencing and avoidance, each explaining 4% of variance of their model. The results add to the nurse second victim literature by validating 2 posttraumatic stress disorder symptoms in RNs in the aftermath of a PSI. Registered nurses with perfectionism-order were less likely to abuse alcohol.

TPS500 Background: The majority of patients with intrahepatic cholangiocarcinoma (ICC) present with advanced liver dominant disease rendering them unresectable. The current standard of care supports palliative treatment of unresectable ICC with gemcitabine plus cisplatin. Alternatively, continuous liver-directed therapy using a surgically implanted hepatic arterial infusion (HAI) pump allows for maximal treatment of liver tumors with limited systemic side-effects and can facilitate conversion to a resectable status. No prospective clinical trial has utilized FOLFIRINOX in combination with HAI floxuridine-dexamethasone for ICC. Methods: HELIX-ICC is a first-line, single-center, single-arm, phase II clinical trial enrolling patients with liver-dominant unresectable or multifocal ICC. Only patients with microsatellite stable cancer and no prior liver radiotherapy will be included. Patients are administered dose-modified FOLFIRINOX systemically for 4 cycles over 8 weeks. Those with evidence of disease control on restaging imaging and laparoscopy will proceed to HAI pump placement. Treatment continues with two 28-day cycles of combined HAI floxuridine (1.08 mg/kg) with dexamethasone for 14 days and systemic dose-modified FOLFIRI starting on day 15. The primary objectives are to evaluate the safety and efficacy (disease control rate [DCR] at 6 months) of this novel treatment approach that utilizes our institutional dose-reduced HAI floxuridine protocol in combination with modified systemic regimens to facilitate control of liver disease and maximize patient quality of life (QoL). HELIX-ICC includes many exploratory analyses through longitudinal collection of blood samples, liver biopsies (including an end of trial research biopsy), and QoL metrics (Table). The study is open to n = 30 with an initial safety run-in of 6 patients, of which 4 have enrolled at the time of submission. This study is designed to allow for drop out of 9 patients, with total accrual of 21 patients to protocol completion achieving 80.2% power at 0.05 significance to detect a 25% increase in DCR at 6 months. Clinical trial information: NCT04251715. [Table: see text]

PURPOSE/OBJECTIVES To describe the presence, frequency, severity, and distress of symptoms in outpatients with advanced hepatocellular carcinoma toward the end of life, and the variability in psychological and physical symptom distress between and within patients over time. . DESIGN A prospective, longitudinal, descriptive design. . SETTING Outpatient clinics at two healthcare institutions. . SAMPLE 18 patients (15 men and 3 women) with hepatocellular carcinoma and a mean age of 63.3 years (range = 54-81 years). . METHODS Data were collected monthly for six months. Patients completed the Memorial Symptom Assessment Scale, which reports a total score, and three subscales that provide global distress, psychological distress, and physical distress scores. . MAIN RESEARCH VARIABLES Global, psychological, and physical distress. . FINDINGS Patients reported lack of energy and pain as the most frequent and distressing symptoms. Problems with sexual interest or activity was the fourth most present symptom after drowsiness. Global Distress Index mean scores had notable variability between and within patients over time. During data collection, six patients died. None were referred to palliative care. . CONCLUSIONS Gaining knowledge about symptom distress and prevalent symptoms experienced by patients with advanced hepatocellular carcinoma is critical for designing symptom management strategies that are comprehensive and tailored to patients to optimize their quality of life as they approach death. . IMPLICATIONS FOR NURSING Nurses play a vital role in advocating for, initiating, and providing comprehensive holistic care based on individual patient needs by facilitating discussions about apparent and less apparent distressing symptoms, including those related to sexuality.

BACKGROUND Hospice, a patient-centered care system for those with limited life expectancy, is important for enhancing quality of life and is understudied in integrated health care systems. METHODS This was a retrospective cohort study of 21,860 decedents with advanced-stage lung cancer diagnosed from January 2007 to June 2013 in the national US Veterans Affairs Health Care System. Trends over time, geographic regional variability, and patient and tumor characteristics associated with hospice use and the timing of enrollment were examined. Multivariable logistic regression and Cox proportional hazards modeling were used. RESULTS From 2007 to 2013, 70.3% of decedents with advanced-stage lung cancer were enrolled in hospice. Among patients in hospice, 52.9% were enrolled in the last month of life, and 14.7% were enrolled in the last 3 days of life. Hospice enrollment increased (adjusted odds ratio [AOR], 1.07; P < .001), whereas the mean time from the cancer diagnosis to hospice enrollment decreased by 65 days (relative decrease, 32%; adjusted hazard ratio, 1.04; P < .001). Relative decreases in late hospice enrollment were observed in the last month (7%; AOR, 0.98; P = .04) and last 3 days of life (26%; AOR, 0.95; P < .001). The Southeast region of the United States had both the highest rate of hospice enrollment and the lowest rate of late enrollment. Patient sociodemographic and lung cancer characteristics were associated with hospice enrollment. CONCLUSIONS Among patients with advanced-stage lung cancer in the Veterans Affairs Health Care System, overall and earlier hospice enrollment increased over time. Considerable regional variability in hospice enrollment and the persistence of late enrollment suggests opportunities for improvement in end-of-life care. Cancer 2017. © 2017 American Cancer Society.

Purpose of the study Adult daughters providing care to aging, ill mothers comprise the most prevalent caregiving dyad. Little is known, however, regarding relationship quality and its impact on care in these dyads, particularly in the context of cognitively intact patients at end of life in hospice. This interpretive descriptive work privileges voices of terminally ill mothers and care-partnering daughters in the home hospice context. Specific aims were to describe and interpret how mothers and daughters: (a) perceive relationship quality and (b) perceive how relationships have developed over time through health, chronic illness, and hospice. Design and methods Semistructured interviews were used to explore interdependent perceptions of relationship quality in 10 terminally-ill mother-adult daughter care dyads. A novel method of qualitative dyadic analysis was developed to analyze dyads in close parallel at both individual/descriptive and dyadic/interpretive levels, staying true to qualitative rigor. Results A relationship quality spectrum emerged, from Close Friendship to Doing My Duty dyads. Women in Close Friendships revealed concordant narratives and emotionally satisfying relationships; women in neutral or troubled relationships revealed discordant relational stories. In these latter dyads, mothers reported more positive narratives; daughters spoke of relational problems. Implications This work suggests deeper exploration of mother-daughter dyads within the hospice context and interventions at both individual and dyadic levels to serve relational needs of the dying and their families. The qualitative dyadic approach also offers utility for relational investigations of any dyad.

Introduction In the USA, veterans are increasingly using and requesting complementary and alternative therapies. Our goal was to explore long-term changes in symptoms for veterans in two groups: veterans with hepatitis C (HCV) not receiving antiviral therapy (HCV-only group), and veterans with HCV who were receiving antiviral triple therapy (HCV-TT group). Methods This pilot study used a mixed method prospective descriptive design. Participants were asked to attend two acupuncture sessions per week for eight weeks. Quantitative data were collected at 7 time points over the course of 10 weeks using validated instruments. Semi structured individual interviews were carried out before and after treatment. Main outcome measures were changes from baseline in physical and psychological symptoms, including fatigue, depression, quality of life, pain, and other symptom burden. Results Although pain changes from baseline were not significant, pain disability changes were significant and varied depending on HCV treatment status. In fatigue, depression, and symptoms, we found a trend toward improvement in the HCV-only group. Qualitatively, improved mood was the most commonly reported change after acupuncture, followed by decreased pain, medication use, and fatigue, leading to improved quality of life. All veterans were pleased with their acupuncture experience and would recommend this therapy to others. Conclusions Despite the effects of a debilitating medication regimen for veterans undergoing TT, all veterans reported having a positive experience with acupuncture. We found that acupuncture is desired by veterans and can improve symptoms commonly experienced by veterans with HCV.

Importance Palliative care is a patient-centered approach associated with improvements in quality of life; however, results regarding its association with a survival benefit have been mixed, which may be a factor in its underuse. Objective To assess whether early palliative care is associated with a survival benefit among patients with advanced lung cancer. Design, Setting, and Participants This retrospective population-based cohort study was conducted among patients with lung cancer who were diagnosed with cancer between January 1, 2007, and December 31, 2013, with follow-up until January 23, 2017. Participants comprised 23 154 patients with advanced lung cancer (stage IIIB and stage IV) who received care in the Veterans Affairs health care system. Data were analyzed from February 15, 2019, to April 28, 2019. Exposure Palliative care defined as a specialist-delivered palliative care encounter received after lung cancer diagnosis. Main Outcomes and Measures The primary outcome was survival. The association between palliative care and place of death was also examined. Propensity score and time-varying covariate methods were used to calculate Cox proportional hazards and to perform regression modeling. Results Of the 23 154 patients enrolled in the study, 57% received palliative care. The mean (SD) age of participants was 68 (9.5) years, and 98% of participants were men. An examination of the timing of palliative care receipt relative to cancer diagnosis found that palliative care received 0 to 30 days after diagnosis was associated with decreases in survival (adjusted hazard ratio [aHR], 2.13; 95% CI, 1.97-2.30), palliative care received 31 to 365 days after diagnosis was associated with increases in survival (aHR, 0.47; 95% CI, 0.45-0.49), and palliative care received more than 365 days after diagnosis was associated with no difference in survival (aHR, 1.00; 95% CI, 0.94-1.07) compared with nonreceipt of palliative care. Receipt of palliative care was also associated with a reduced risk of death in an acute care setting (adjusted odds ratio, 0.57; 95% CI, 0.52-0.64) compared with nonreceipt of palliative care. Conclusions and Relevance The results suggest that palliative care was associated with a survival benefit among patients with advanced lung cancer. Palliative care should be considered a complementary approach to disease-modifying therapy in patients with advanced lung cancer.

This chapter examines the organ donation process from the time the bedside nurse recognizes that a patient should be referred for organ donation until organ procurement has been completed. It also discusses when to speak with families about organ donation, how to address family concerns, the clinical triggers for organ donation, differences between brain death donation and donation after circulatory death (DCD), and palliative care for patients who are candidates for DCD. State and federal regulations related to prospective donors and safeguarding standards that are in place for organ procurement organizations (OPO) and hospitals are also included.

In patients with colorectal cancer (CRC) that metastasizes to the liver, there are several key goals for improving outcomes including early detection, effective prognostic indicators of treatment response, and accurate identification of patients at high risk for recurrence. Although new therapeutic regimens developed over the past decade have increased survival, there is substantial room for improvement in selecting targeted treatment regimens for the patients who will derive the most benefit. Recently, there have been exciting developments in identifying high-risk patient cohorts, refinements in the understanding of systemic vs localized drug delivery to metastatic niches, liquid biomarker development, and dramatic advances in tumor immune therapy, all of which promise new and innovative approaches to tackling the problem of detecting and treating the metastatic spread of CRC to the liver. Our multidisciplinary group held a state-of-the-science symposium this past year to review advances in this rapidly evolving field. Herein, we present a discussion around the issues facing treatment of patients with CRC liver metastases, including the relationship of discrete gene signatures with prognosis. We also discuss the latest advances to maximize regional and systemic therapies aimed at decreasing intrahepatic recurrence, review recent insights into the tumor microenvironment, and summarize advances in noninvasive multimodal biomarkers for early detection of primary and recurrent disease. As we continue to advance clinically and technologically in the field of colorectal tumor biology, our goal should be continued refinement of predictive and prognostic studies to decrease recurrence after curative resection and minimize treatment toxicity to patients through a tailored multidisciplinary approach to cancer care. Keywords: Colorectal Cancer Liver Metastasis, Biomarkers, Hepatic Arterial Infusion, High-Risk Colorectal Cancer, Recurrence

To understand how well palliative care is provided in the intensive care unit (ICU) and to direct improvements, measurement of the quality of care delivered is requisite.To measure the quality of palliative care delivered in the ICU, using chart review-derived process quality measures of palliative care in critically ill patients, and to compare these measures with family and nursing perspectives on the quality of care provided.We developed and operationalized a comprehensive quality evaluation measure set from previously endorsed palliative care measure statements, using a rigorous multidisciplinary Delphi process focused on optimizing the validity and feasibility of chart review-derived metrics. Fourteen process measures assessed the quality of care delivered across established domains of palliative care for the ICU. We assessed the quality of care for ICU patients with ICU length of stay exceeding 2 days from three perspectives: medical record reviews, family satisfaction reports, and nurse ratings from those providing care in the ICU.We evaluated the care over a 7-month period of 150 patients (mean age, 63.9 yr [SD 13.4], average ICU length of stay, 7.5 d [SD 7.2]). Overall, ICU patients received 53.1% of recommended palliative care. The Family Satisfaction with Care in the Intensive Care Unit total scores from 136 family members (response rate, 91%) were high, 85.7 (SE 2.0) and 86.0 (SE 1.6), at the two sites but not correlated to measured quality delivered. Nurses rated the quality of care higher than medical record review (mean, 77.3% [SD 13.4]; n = 135) and similarly correlation with chart based process measures was poor.Delivering high-quality palliative care in the ICU requires assessing key patient-centered domains. However, assessments from different perspectives do not always agree with technical quality of care as measured through chart-based metrics. We found deficits across seven domains of technical quality that were not correlated with either nurse or family ratings. Despite care gaps, families were generally satisfied with the care delivered. We conclude that each measurement perspective provides an independent view that can guide quality improvement and innovation work as well as subsequent research.

Research shows that the well-being of patients with serious illness and their family caregivers is significantly associated. Thus, to build the scientific knowledge upon which to establish high quality palliative and end-of-life care practices for these patients and their caregivers, research studies should include successful recruitment and retention strategies that focus on the patient-caregiver dyad. Aims: To review the literature focusing on successful dyadic recruitment and retention strategies and to describe successful recruitment and retention strategies, and attrition in a longitudinal study of end-stage liver disease (ESLD) patient-caregiver dyads. Methods: A five-year prospective longitudinal study of dyads included quantitative and qualitative data collected at 5 time points over 1 year: at baseline, 3, 6, 9, and 12 months. Results: Over a 32-month period 336 dyads were approached and 241 were enrolled. The refusal rate was 27 dyads (8.0%). Over the course of the study, 31 patients or caregivers withdrew for various reasons (too sick, liver transplantation). The attrition due to death of patients was 53 dyads (20.2%). Successful strategies used for recruitment and retention included tailoring to provider preference for referral, accommodating patient preference for data collection method, and having predictable and ongoing contact between a specific study staff and dyads. Conclusions: Less than 10 studies address recruitment and retention strategies most effective in dyadic research in various serious illnesses and clinical settings. Recruitment of ESLD patient-caregiver dyads is challenging. Future longitudinal dyadic studies of serious illnesses and palliative care may benefit from strategies learned from the current ESLD study.

Introduction: Much interventional research seeks to reduce childhood obesity by capitalizing on parents’ influence as caregivers. However, few studies have investigated whether grandparent-caregivers might have a similar influence on children’s weight-related health. This dearth of evidence is surprising since there has been a rapid increase in grandparent caregiving in the U.S. Purpose: Examine for a ripple effect on weight-related outcomes in children whose grandparent-caregivers have been enrolled in a weight loss program. Methods: We recruited 9 grandparent-grandchild (aged 6 to 12 years) dyads where both members had overweight or obesity. We collected data on weight/height, physical activity/sedentary time, and dietary behaviors at baseline and at 8 weeks. Physical activity and sedentary time data were collected using accelerometers over two, seven-day cycles (after baseline and 8-weeks’ visits). Dietary data were collected using the Block Food Screener. Spearman’s rank-order correlation was used to quantify associations in changes between the dyad members. Results: Mean age was 64.3 ± 5.2 years and 9.0 ± 1.7 years for grandparents and grandchildren, respectively; 88.9% of grandparents and 66.7% of grandchildren were female. At 8 weeks: (1) there was a positive association between changes in grandparents’ BMI and changes in their grandchildren’s BMI (r=0.40; p Conclusions: We demonstrated moderate associations between changes in children’s BMI/MVPA/sedentary time and changes in their grandparents’ BMI/MVPA/sedentary time. Our findings show that enrolling adult caregivers in weight loss programs could represent an effective delivery vehicle for improving childhood obesity. Additionally, our findings can help demonstrate to grandparent-caregivers that they can act as agents for improving health outcomes in their grandchildren by improving their own weight-related health, offering encouragement for grandparent-caregivers to enroll in weight-loss programs.

Research on symptom distress experienced by patients with end-stage liver disease at the end of life is limited. The aims of the study were to describe presence, frequency, severity, and distress of symptoms in patients with end-stage liver disease toward the end of life and to describe the variability in psychological and physical symptom distress between and within patients over time. This study used a prospective, longitudinal descriptive design. Data were collected from 20 patients once a month for up to 6 months. Participants completed the Memorial Symptom Assessment Scale, which reports a total score, a Global Distress Index score, and a psychological and a physical distress score. Patients reported lack of energy, pain, difficulty sleeping, and feeling drowsy as the most frequent, severe, and distressing symptoms. Global Distress Index mean scores (measured on a 1-4 scale) ranged from 2.6 to 2.9 across time. There was notable variability in psychological and physical distress scores between and within patients across time. Gaining knowledge about the prevalent symptoms experienced by patients with end-stage liver disease and the trajectory of these symptoms is crucial for designing interventions that optimize well-being in patients with end-stage liver disease as they are approaching death.

Purpose Hepatocellular carcinoma (HCC), the most common type of primary liver cancer, has a rapidly rising prevalence in the United States and a very poor overall rate of survival. This epidemic is driven by the cohort of aging Baby Boomers with hepatitis C viral infection and the increasing prevalence of cirrhosis as a result of nonalcoholic steatohepatitis. Because curative options are limited, the disease course creates, in patients and their families, distressing uncertainty around prognosis and treatment decisions. Older adults are disproportionately affected by HCC and have more comorbidities, adding to the complexity of the disease. This population would benefit from increased access to palliative care services, which can potentially complement the treatments throughout the disease trajectory. The purpose of this review was to use existing evidence to propose a new model of palliative care integration in patients with HCC. Thus, we focus on the HCC stage and the treatment algorithm, the ways that palliative care can offer support in this population at each stage, as well as elements that can enhance patient and family support throughout the entire disease trajectory, with an emphasis on the care of older adults with HCC. Methods This is a narrative review in which we identify evidence-based ways that palliative care can help younger and older adults with HCC and their families, at each stage of HCC and throughout the disease trajectory. Findings We propose ways to integrate HCC and palliative care based on the existing evidence in both fields. Palliative care offers support in symptom management, advanced care planning, and decision making in ways that are specific to each stage of HCC. We also discuss the evidence that illustrates the palliative care needs of patients with HCC that span the entire course of illness, including coping with the stigmatization of liver disease, addressing informational needs at different stages, and discussing quality of life longitudinally. Implications Integrating palliative care into the treatment of patients with HCC has the potential to improve outcomes, although more research is needed to build this evidence base.

Purpose/objectives To explore family caregivers' perspectives of caring for patients with terminal hepatocellular carcinoma (HCC) as patients approached the end of life. . Research approach Longitudinal, qualitative descriptive design. . Setting Oregon Health and Science University in Portland and Veterans Affairs Portland Health Care System in Oregon. . Participants 13 family caregivers with a mean age of 56 years (range = 22-68 years). The majority of family caregivers were female (n = 10) and identified as White (n = 11). . Methodologic approach Interview data were collected from family caregivers once a month for as many as six months, for a total of 39 interviews. Data were analyzed using conventional content analysis. . Findings Five core categories and nine subcategories were identified. From the time of the terminal diagnosis to the end of life, family caregivers felt unprepared, uncertain, and in need of information. They struggled with whether symptoms were HCC- or cirrhosis-related. . Interpretation Nurses can support family caregivers by eliciting their knowledge and concerns, and attending to symptom presentation and interpretation and to treatment challenges. Understanding challenges caregivers experience is crucial for developing interventions that address their desire for information, support, and help along the HCC disease trajectory. . Implications for nursing Nurses play a critical role in preparing caregivers to understand the importance of pain assessment and management and early referral to palliative care.

End-stage liver disease (ESLD), the final stage of chronic liver disease, is treated with liver transplant. Many patients have serious ESLD-related complications and are admitted to the intensive care unit for treatment. Such patients are temporarily unsuitable to undergo transplant surgery and are placed into a temporarily inactive category, “status 7,” on the transplant waiting list. Status 7 patients account for about 15% of all patients on the list. To describe the experience of a status 7 patient on the liver transplant waiting list from the perspectives of family members, 38 hours of bedside observation of participants, 9 semistructured interviews with 6 family members, and 9 semistructured interviews with 8 health care professionals from nursing, medicine, and other health care disciplines were done. Data were analyzed via conventional content analysis. Family members’ perspectives fit into 3 phases that correspond to the progression of the patient’s clinical condition: dealing with crisis, confusion and frustration, and back on the road to transplant. All 3 phases related to 1 goal: getting the patient’s status reactivated on the liver transplant waiting list. This case exposes the struggles that patients with ESLD and their families may go through during the status 7 period and could serve as a starting point for further examination of this period.

Background: The Veterans Health Administration (VHA) system is the largest single provider for patients with hepatitis C (HCV) in the United States. Many individuals with HCV experience physical and psychologic symptoms, such as pain, fatigue, and depression. In addition, current antiviral therapy for HCV is long (24–48 weeks) and has many potential side-effects. Objectives: The purpose of this pilot study was to determine the acceptability, adherence, and feasibility of group acupuncture in order to inform the development of a larger randomized trial (RCT). The primary aim was to describe the experience of two groups of Veterans undergoing acupuncture for symptom management: (1) Veterans who have HCV and (2) Veterans who have HCV and were currently receiving antiviral therapy. Materials and Methods: This study used a prospective descriptive design that involved both quantitative and qualitative methods A total of 39 Veterans—23 in the HCV-only group and 16 in the HCV/antiviral group—were enrolle...

This prospective descriptive study investigated pain characteristics in 20 outpatients with end-stage liver disease (ESLD) who were approaching the end of life, described variability in pain between and within patients, and described the pharmacological and nonpharmacological pain management strategies used. The instruments we utilized were the Brief Pain Inventory (BPI) and the self-care behaviour (SCB) log for pain. Data were collected once a month over a six-month period. BPI severity of, and interference from pain mean scores ranged from 5.52 to 6.03 and 5.36 to 6.64, respectively. The top three pain-relieving behaviours reported by patients were “taking pain medication,” “taking a nap,” and “asking for help.” Pain medication intake differed between patients who were pursuing a liver transplant and those who were not eligible for one. If we are to effectively improve care for ESLD patients, it is essential that we understand the ways in which these patients experience pain and the pain management strategies they employ.

Background/aims: Similar to many chronic diseases, depression is common in patients with end-stage liver disease (ESLD), although gender differences are less known. Understanding the burden of depression in this population may help identify at-risk patients who would benefit from early intervention. The purpose of this work, therefore, is to describe gender differences in depressive symptoms in patients with ESLD. Methods: Patient data were collected as part of a larger study (NINR: 1R01NR016017-01). Patients (≥ 21 years) diagnosed with ESLD from the outpatient hepatology clinics of two healthcare systems in Pacific Northwest completed Patient Health Questionnaire (PHQ-9). Survey data were analyzed using descriptive statistics. Results: Sample included 154 participants, 101 males (65.6%), average age 57 years (SD=10.92), and 53 females (34.4%), average age 55 years (SD=11.28). More than 75% of the sample (78% females and 77% males) reported at least mild depression (PHQ score ≥ 5); mean PHQ-9 scores were higher for males (M=9.26±5.86) than females (M=9.10±5.07), but were not statistically different (U=2396, p=0.99). There was no significant relationship between depression severity and gender [X2 (4, N=147)=1.90, p=0.594]. Conclusion: Our study showed a high prevalence of depression in patients. A higher percentage of females reported mild to moderate depression and had higher clinically significant levels of depression (PHQ-9 score ≥ 10) than males, indicating females may be at a greater risk for depression. Females may, therefore, gain greater benefit from interventions to improve depressive symptoms. Future studies should examine the benefit of interventions on depression severity in this patient population.

Objectives:To explore the unique lived experiences of one patient who died at home and her family members, and to interpret how dying at home influenced patterns of bereavement for this patient's family.Methods:Benner's (1985) interpretive phenomenological approach was employed to get at the embedded nature of the social phenomenon of dying at home, uncovering what may be taken for granted by participants — in this case, during and after the patient's home hospice course. The participants were a 78-year-old female diagnosed with amyotrophic lateral sclerosis six months prior to death, her husband, and three of her four children. In line with the patient's wish to die at home, she voluntarily forewent food and drink when she no longer wished to watch her body deteriorate and felt that her life had run its course. She informed her family of this plan, and all were supportive. For data collection, separate single in-depth interviews were conducted with the deceased three months prior to death, and after death with three of her four children and her spouse of 60 years. For data analysis, the interview transcripts were coded for paradigm cases, exemplars, and themes.Results:The paradigm case, “The Meaning of Being at Home,” revealed that for study participants, remaining home with hospice provided a richly familiar, quiet, and safe environment for being together over time and focusing on relationships. Exemplars included “Driving Her Own Course” and “Not Being a Burden.” Salient themes encompassed patient and family characteristics, support, emotions, the value of time, and aspects of the healthcare team.Significance of results:End-of-life care providers need to hold a patient-centered, family-focused view to facilitate patient and family wishes to remain home to die. Investigation into family relationships, from the perspectives of both patient and family members, longitudinally, may enrich understanding and ability and help patients to die at home.

Over half a million Americans are affected by cirrhosis, the cause of end-stage liver disease (ESLD). Little is known about how symptom burden changes over time in adults with ESLD and their informal caregivers, which limits our ability to develop palliative care interventions that can optimize symptom management and quality of life in different patient-caregiver dyads. The purpose of this article is to describe the background and design of a prospective, longitudinal descriptive study, "Symptom Burden in End-Stage Liver Disease Patient-Caregiver Dyads," which is currently in progress. The study is designed to (i) identify trajectories of change in physical and psychological symptom burden in adults with ESLD; (ii) identify trajectories of change in physical and psychological symptom burden in caregivers of adults with ESLD; and (iii) determine predictors of types of patient-caregiver dyads that would benefit from tailored palliative care interventions. We aim for a final sample of 200 patients and 200 caregivers who will be followed over 12 months. Integrated multilevel and latent growth mixture modeling will be used to identify trajectories of change in symptom burden, linking those changes to clinical events, and quality of life outcomes and characterizing types of patient-caregiver dyads based on patient-, caregiver-, and dyad-level factors. Challenges we have encountered include unexpected attrition of study participants, participants not returning their baseline questionnaires, and hiring and training of research staff. The study will lay the foundation for future research and innovation in ESLD, end-of-life and palliative care, and caregiving.

Background: Family members’ perspectives about satisfaction with care provided in the intensive care unit (ICU) have become an important part of quality assessment and improvement, but national and international differences may exist in care provided and family perspectives about satisfaction with care. Objective: The purpose of the research was to understand family members’ perspectives regarding overall care of medical patients receiving intensive care. Methods: Family members of medical patients who remained 48 hours or more in two adult ICUS at two healthcare institutions in the U.S. Pacific Northwest took part by responding to the Family Satisfaction with Care in the Intensive Care Unit survey. Qualitative content analysis was used to identify major categories and subcategories in their complimentary (positive) or critical (negative) responses to open-ended questions. The number of comments in each category and subcategory was counted. Results: Of 138 responding family members, 106 answered the open-ended questions. The 281 comments were more frequently complimentary (n = 126) than critical (n = 91). Three main categories (competent care, communication, and environment) and nine subcategories were identified. Comments about the subcategory of emotional/interrelational aspects of care occurred most frequently and were more positive than comments about practical aspects of care. Discussion: Findings were similar to those reported from other countries. Emotional/interrelational aspects of care were integral to family member satisfaction with care provided. Findings suggest that improving communication and decision-making, supporting family members, and caring for family loved ones as a person are important care targets. Initiatives to improve ICU care should include assessments from families and opportunity for qualitative analysis to refine care targets and assess changes.

We conducted a prospective study in the ICU of life-sustaining treatment and comfort care decisions over time in patients with end-stage liver disease from the perspectives of patients, family members, and health care professionals. Six patients with end-stage liver disease, 19 family members, and 122 professionals participated. The overarching theme describing the decision-making process was “on the train.” Four sub-themes positioned patients and family members as passengers with limited control, unable to fully understand the decision-making process. Findings suggest that including patients and family members in non-immediate lifesaving decisions and verifying early on their understanding may help to improve the decision-making process.

Older adults dying from chronic illness in rural areas are understudied and of concern because of their limited access to health services. The purpose of this qualitative descriptive study was to describe the perspectives of primary family caregivers regarding experiences with formal and informal care at the end of life for dying older adults in one rural, agricultural county. Semi-structured interviews were conducted with 23 caregivers following the death of an older relative. Major themes that emerged from the data were the benefits and challenges associated with care services. Benefits included neighbors, friends, and other volunteers who offered household help and provided respite care. Challenges included limited resources for continuity of care, geographical service boundaries, and lack of knowledge about end-of-life care by paid caregivers. Further research that addresses the perspective of rural service providers is needed to better understand the benefits and challenges of end-of-life care in this setting.

Background: Hepatocellular carcinoma (HCC) is the second leading cause of cancer related mortality in the world. It is often diagnosed at an advantaged stage. Due to the numerous physical and psychological symptoms and the number of treatments patients receive, management is extremely complex and may best be done by a multi-disciplinary liver tumor board. Research is lacking on these tumor boards and on health care professionals’ (HCPs) perspectives on the challenges they face in caring for patients with HCC.

As the seventh leading cause of death among people aged 25 to 64 years, end-stage liver disease (ESLD) affects many Americans in the most productive years of their lives. Despite the increasing number of individuals who are dying of ESLD, little is documented about their end of life challenges as the disease progresses. The purpose of this article is to highlight specific challenges for people with ESLD, their families, and their implications for health care providers: ascites, spontaneous bacterial peritonitis, hepatic encephalopathy, malnutrition, altered drug metabolism, renal insufficiency and hyponatremia, hepatocellular carcinoma, and pain. The authors also present a case study to illustrate disease progression and difficulties facing patients, family members, and providers.