Lissi Hansen

Discharge planning for palliative care patients: a qualitative analysis.

For patients hospitalized with life-threatening illnesses and their families, palliative care consultants can provide critical support by providing information about prognosis, ensuring that symptoms are managed, helping to clarify goals of care, and addressing psychosocial and spiritual concerns. However, once patients leave the hospital, many hospital-based palliative care teams (PCTs) cannot continue to play active roles in patient care. Gaps in discharge planning not only decrease quality of life for patients, but also translate into lack of support for caregivers. The palliative care population would be expected to benefit from a customized approach to hospital discharge. The aim of this study was to identify the range of health care experiences of family caregivers and patients who received palliative care consultations after they left the hospital, and to understand how PCTs might best prepare patients and caregivers for the post-hospital experience.

Colorectal Cancer Liver Metastasis: Evolving Paradigms and Future Directions

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.

End-Stage Liver Disease: Challenges and Practice Implications

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.

'I still don't know diddly': a longitudinal qualitative study of patients' knowledge and distress while undergoing evaluation of incidental pulmonary nodules.

Background:Hundreds of thousands of incidental pulmonary nodules are detected annually in the United States, and this number will increase with the implementation of lung cancer screening. The lengthy period for active pulmonary nodule surveillance, often several years, is unique among cancer regimens. The psychosocial impact of longitudinal incidental nodule follow-up, however, has not been described.Aims:We sought to evaluate the psychosocial impact of longitudinal follow-up of incidental nodule detection on patients.Methods:Veterans who participated in our previous study had yearly follow-up qualitative interviews coinciding with repeat chest imaging. We used conventional content analysis to explore their knowledge of nodules and the follow-up plan, and their distress.Results:Seventeen and six veterans completed the year one and year two interviews, respectively. Over time, most patients continued to have inadequate knowledge of pulmonary nodules and the nodule follow-up plan. They desired and appreciated more information directly from their primary care provider, particularly about their lung cancer risk. Distress diminished over time for most patients, but it increased around the time of follow-up imaging for some, and a small number reported severe distress.Conclusions:In settings in which pulmonary nodules are commonly detected, including lung cancer screening programmes, resources to optimise patient-centred communication strategies that improve patients’ knowledge and reduce distress should be developed.

Patients With Hepatocellular Carcinoma Near the End of Life: A Longitudinal Qualitative Study of Their Illness Experiences.

Background: In the United States, the incidence of hepatocellular carcinoma (HCC) is rising. For those diagnosed with terminal HCC, there is no curative treatment and duration of survival is typically 1 to 2 years. Research on illness and treatment experiences toward the end of life for patients with terminal HCC is limited. Objective: The aim of this study was to explore the illness experiences of patients with terminal HCC as they approached the end of life. Methods: This study used a prospective, longitudinal descriptive design. Interview data were collected from 14 patients once a month for up to 6 months, for a total of 45 interviews. Data were analyzed using conventional content analysis. Results: Three major themes (illness perceptions, decision to start treatment, and navigating treatment over time) and 10 subthemes were identified that were reflected across time in all patient experiences. Patients faced challenges with symptom experiences, treatment decisions, and unmet information needs affecting their quality of life. Conclusions: Gaining knowledge about the challenges facing patients with HCC is crucial for designing interventions that optimize their quality of life. Implications for Practice: Healthcare professionals may improve the quality of life of patients with terminal HCC by eliciting patients’ perceptions of their illness and treatment decisions, symptom experiences, and information needs as the disease progresses and providing symptom management and offering information tailored to their needs. Care for patients with HCC who are approaching the end of life should be multidisciplinary and include timely referral to palliative care.

End-of-life care for rural-dwelling older adults and their primary family caregivers.

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.

Medical Record Quality Assessments of Palliative Care for Intensive Care Unit Patients. Do They Match the Perspectives of Nurses and Families

RATIONALE 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. OBJECTIVES 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. METHODS 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. MEASUREMENTS AND MAIN RESULTS 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. CONCLUSIONS 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.

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.

Symptom Distress in Patients With Hepatocellular Carcinoma Toward the End of Life

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.

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.