Role of Uncertainty in Illness and Coping Strategies in Advance Directive Completion in Patients With End-stage Liver Disease.

OBJECTIVE: We examined the associations among advance directives (ADs) completion, coping, uncertainty in illness, and optimism and pessimism in patients with end-stage liver disease (ESLD). BACKGROUND: Although associations among ADs, coping, and uncertainty have been studied in patients with other life-limiting illnesses, these concepts have not been studied together in patients with ESLD. PATIENTS AND METHODS: Patients were recruited at 2 health care institutions as part of a larger prospective study. They were enrolled if they had a diagnosis of nonhepatocellular carcinoma ESLD, Sodium Model for End-Stage Liver Disease ≥15, and no prior history of liver transplantation. Uncertainty, coping, optimism, and pessimism were assessed using the Uncertainty in Illness Scale for Adults, Revised Ways of Coping Checklist, and Life Orientation Test-revised. AD documentation at the time of study enrollment was retrospectively extracted from patient medical records. RESULTS: In the sample [N = 181; median age = 57 y, 115 (64%) males], male sex [odds ratio (OR) = 4.66; 95% CI: 1.53, 14.17], being listed or under evaluation for liver transplantation (OR = 3.09; 95% CI: 1.10, 8.67), greater Sodium Model for End-Stage Liver Disease scores (OR = 1.10; 95% CI: 1.01, 1.20), and greater uncertainty (OR = 1.04; 95% CI: 1.01, 1.07) were positively associated with AD documentation. Higher coping avoidance was negatively associated with AD documentation (OR = 0.915; 95% CI: 0.840, 0.997). CONCLUSIONS: Clinicians should consider the role of uncertainty and coping measures to improve patient-specific advance care planning conversations and expand opportunities for all patients with ESLD to file an AD, especially women and patients not listed or under evaluation for transplantation.

Informal Family Care Partner Well-Being Is Diminished in End-Stage Liver Disease.

BACKGROUND: Chronic liver disease is a significant global neglected public health problem. End-stage liver disease is associated with substantial symptom complexity, disability, and care needs that require assistance from informal family care partners. Research on these care partners' caregiver burden or strain, symptoms, and quality of life is sparse and has not focused on these variables as co-occurring or in the context of the quality of the relationship care partners have with the patients. OBJECTIVES: The purpose of this study was to provide a collective presentation of patterns and determinants of well-being as measured by caregiver strain, depression, sleep, and quality of life in a cohort of informal family care partners for adult outpatients with end-stage liver disease. METHODS: Care partners (aged >18 years) were recruited from two liver clinics within two tertiary healthcare systems and invited to complete a cross-sectional survey. They completed the Multidimensional Caregiver Strain Index, Patient Health Questionnaire, Pittsburgh Sleep Quality Index, Short Form Health Survey, and Mutuality Scale. Descriptive statistics and latent class mixture modeling were used to analyze these data. RESULTS: The sample was predominantly female and White. The well-being of care partners was diminished. Three distinct classes of well-being were identified: mildly diminished (53.2%), moderately diminished (39.0%), and severely diminished (7.8%). Those at a greater risk of worse well-being were younger and spouses and had poorer relationship quality with the patients. DISCUSSION: To improve the well-being of care partners in moderately and severely diminished classes, assessing and addressing caregiver strain and co-occurring symptoms is essential. Addressing the strain and symptoms has the potential to maintain or optimize care partners' ability to provide care to patients. Future researchers should include longitudinal and dyadic studies to examine how patients' disease progression and symptoms may affect family care partners' well-being and vice versa.

An ecosystem approach to mentoring research faculty in schools of nursing: The pacific northwest interdependence mentoring model.

BACKGROUND: Mentoring can facilitate faculty career development and retention. Given ongoing challenges in academic nursing (e.g., shrinking number of experienced mentors), it is necessary to revisit and improve upon existing mentoring models and practices to support current and future nurse researchers. PURPOSE: To describe the development of a new faculty-to-faculty research mentoring model. METHODS: Construction of a model describing mentoring needed by research-focused nurse faculty based on analysis of the literature alongside the authors' personal experiences. FINDINGS: The Pacific Northwest Interdependence Mentoring Model (PIMM) describes academic nursing as an ecosystem that fosters caring, trust, solidarity, equity, openness, and interdependent relationships among research faculty, administration, institutions, and funding sources. DISCUSSION: Although mentoring environments differ in unique strengths, weaknesses, mission, culture, and values, the PIMM's approach could be applicable for many schools of nursing and beyond to support the growth of the nursing discipline.

Relationships among clinicians are crucial to successful palliative care integration: a qualitative study in lung cancer.

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.

Palliative care is a form of supportive care for patients with a serious illness that improves quality of life among patients with lung cancer and their families. Unfortunately, many patients do not receive this care until they are near the end of life. This study sought to explore clinicians' perspectives regarding ways to enhance the use of palliative care among patients with lung cancer. Using interviews of clinicians from geographically dispersed hospitals within a national healthcare system, the authors explored reasons and potential solutions to improve palliative care delivery. One of the most important factors in enhancing palliative care use was fostering trust and relationships among palliative care and lung cancer clinicians. Workforce shortages also need to be addressed for continued growth in the field of palliative care. Relationships among clinicians are crucial to successful palliative care integration in lung cancer care.

Are Physical and Depressive Symptoms Different Between Women and Men With Heart Failure?: An Exploration Using Two Analytic Techniques.

BACKGROUND: Adults with heart failure (HF) experience a constellation of symptoms; however, understanding of gender differences in HF symptoms remain elusive. The aim of this study was to determine whether there are gender differences in physical and depressive symptoms and symptom patterns in HF using 2 different analytic techniques. METHODS: We performed a secondary analysis of combined data from 6 studies of adults with HF. Physical symptoms were measured with the HF Somatic Perception Scale, and depressive symptoms were measured with the Patient Health Questionnaire-9. First, we performed propensity matching with the nearest neighbor to examine the average treatment effect for HF Somatic Perception Scale and Patient Health Questionnaire-9 in the matched sample of women and men. Next, we used the entire data set in a latent class mixture model to determine patterns of symptoms. Finally, we calculated predictors of class membership with multinomial logistic regression. RESULTS: The sample (n = 524, 86.5% systolic HF) was 37% women with a mean age of 58.3 ± 13.9 years and mean number of years with HF of 6.9 ± 6.9. Three hundred sixty-six participants were matched on propensity scores; there were no significant gender differences in symptom scores between matched women (n = 183) and men (n = 183). Among all 524 participants, 4 distinct latent classes of symptom patterns indicate that many patients with HF are fatigued, some have more depressive symptoms, and others have significantly more edema or cough. Gender did not predict membership to any symptom pattern. CONCLUSIONS: There were significant gender differences in sociodemographics, health behaviors, and clinical characteristics, but not HF symptoms or symptom patterns, using either analytic technique.

Symptom Classes in Decompensated Liver Disease.

BACKGROUND & AIMS: 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. METHODS: 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. RESULTS: 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 (P < .05). The symptom classes also differed significantly in physical and mental quality of life, optimism, and avoidance coping behaviors (all P < .001). CONCLUSIONS: 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 patient's perspective: a qualitative study of individual experience with decision-making, treatment, and recovery for resectable pancreatic cancer.

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.

Symptom Frequency and Distress Underestimated in Decompensated Cirrhosis.

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.

Physical and Mental Quality of Life in Patients With End-Stage Liver Disease and Their Informal Caregivers.

BACKGROUND & AIMS: Management of end-stage liver disease (ESLD) has implications for not only patients' quality of life (QOL), but also their caregivers'. We aimed to identify characteristics of patients with ESLD and their caregivers that are associated with QOL. METHODS: We obtained cross-sectional baseline data from patients and their caregivers (132 dyads; 62% were married or partners), recruited from outpatient hepatology clinics within 2 healthcare centers. Patients were included if their model for end-stage liver disease score was 15 or more; caregivers were identified by the patient as the primary informal caregiver. QOL was measured by the SF-36 and relationship quality using the mutuality scale. We measured uncertainty using the uncertainty in illness scales for patients and caregivers. Multilevel modeling was used to analyze the data. RESULTS: Refractory ascites was associated with worse physical QOL for patients (unstandardized beta [B], -9.19; standard error [SE], 2.28) and caregivers (B, -5.41; SE, 2.33); history of hepatic encephalopathy was associated with worse patient physical QOL (B, -3.86; SE, 1.65). High levels of uncertainty were associated with worse physical and mental QOL for both members of the dyads; relationship quality was significantly associated with patient mental QOL (B, 2.73; SE, 1.19). CONCLUSIONS: Clinicians and researchers should consider the effects of ESLD on caregivers as well as their patients to optimize the QOL for both.

A closer look at quality of life in the hepatocellular carcinoma literature.

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Suicide Risk, Changing Jobs, or Leaving the Nursing Profession in the Aftermath of a Patient Safety Incident.

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 < .001) or was unknown (p < .05) when compared with no harm. RNs were more likely to consider leaving the profession when the degree of harm to the patient was permanent (p < .01) or the patient died (p < .05) when compared with having no harm. RNs future suicidal thinking (i.e., their self-reported likelihood of future suicidal behavior) was statistically significant when degree of harm to the patient was death (p < .05) as a result of a PSI (95% CI [1.11, 8.71]) when compared with no harm. The RNs who had suicidal thoughts over the past year compared with those without and the RNs with future suicidal thinking compared with those without, may respond differently in the aftermath of a PSI. LINKING EVIDENCE TO ACTION: This study served as a pioneering effort to the current understanding between nurse characteristics and patient harm and "dropping out" outcomes in RNs involved in PSIs. RNs involved with PSIs that led to more harm were more likely to change jobs, consider leaving the profession, or contemplate future suicide. These findings have important implications for nurses, administrative managers in healthcare organizations, and researchers.

A Critical Review: Moral Injury in Nurses in the Aftermath of a Patient Safety Incident.

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.

Results from a prospective study of individuals' symptoms and patient activation after hepatitis C treatment.

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.

Improvements in hospice utilization among patients with advanced-stage lung cancer in an integrated health care system.

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 2018;124:426-33. © 2017 American Cancer Society.

Background and design of the symptom burden in end-stage liver disease patient-caregiver dyad study.

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.

Family Perspectives on Overall Care in the Intensive Care Unit.

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.

Living through the end: The phenomenon of dying at home.

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.

Symptom distress in patients with end-stage liver disease toward the end of life.

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.

Relationship Quality in Non-Cognitively Impaired Mother-Daughter Care Dyads: A Systematic Review.

More than 60 million Americans provide care to a family member; roughly two thirds are women providing care to aging mothers. Despite the protective nature of relationship quality, little attention has been given to its role in mother-daughter care dyads, particularly in mothers without cognitive impairment. A systematic appraisal of peer-reviewed, English language research was conducted. Nineteen articles met criteria. When relationship quality is positive, mother-daughter dyads enjoy rewards and mutuality, even when conflict occurs. Daughters grow more emotionally committed to mothers' over the care trajectory, despite increasing demands. Daughters' commitment deepens as mothers physically decline, and mothers remain engaged, emotional partners. When relationship quality is ambivalent or negative, burden, conflict, and blame conspire, creating a destructive cycle. Avenues for continuing study, including utilizing the dyad as the unit of analysis, troubled dyads, longitudinal assessment, and end of life context, are needed before interventions to improve mother-daughter relationship quality may be successfully implemented.