Susan J. Rosenkranz

To be Truly Alive Motivation Among Prison Inmate Hospice Volunteers and the Transformative Process of End-of-Life Peer Care Service

Some US prisons are meeting the growing need for end-of-life care through inmate volunteer programs, yet knowledge of the motivations of inmate caregivers is underdeveloped. This study explored the motivations of inmate hospice volunteers from across Louisiana State (n = 75) through an open-ended survey, a grounded theory approach to analysis, and comparison of responses by experience level and gender. Participants expressed complex motivations; Inter-related themes on personal growth, social responsibility and ethical service to vulnerable peers suggested that inmate caregivers experience an underlying process of personal and social transformation, from hospice as a source of positive self-identity to peer-caregiving as a foundation for community. Better understanding of inmate caregiver motivations and processes will help prisons devise effective and sustainable end of life peer-care programs.

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.

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.

Essential Elements of an Effective Prison Hospice Program

As the number of prison inmates facing end-stage chronic illness grows, more prisons across the U.S. must address the need for end-of-life care. Many will likely need to develop a plan with potentially limited resources and external support. This case study presents one long-running model of care, the Louisiana State Penitentiary Prison Hospice Program. Based on field observations and in-depth interviews with hospice staff, inmate volunteers and corrections officers, we identify five essential elements that have contributed to the long-term operation of this program: patient-centered care, an inmate volunteer model, safety and security, shared values, and teamwork. We describe key characteristics of each of these elements, discuss how they align with earlier recommendations and research, and show how their integration supports a sustained model of prison end-of-life care.

Caring to Learn and Learning to Care: Inmate Hospice Volunteers and the Delivery of Prison End-of-Life Care

The increasing numbers of aging and chronically ill prisoners incarcerated in Western nations is well-documented, as is the growing need for prison-based palliative and end-of-life care. Less often discussed is specifically how end-of-life care can and should be provided, by whom, and with what resources. One strategy incorporates prisoner volunteers into end-of-life services within a peer-care program. This article reports on one such program based on focused ethnographic study including in-depth interviews with inmate hospice volunteers, nursing staff, and corrections officers working in the hospice program. We describe how inmate volunteers learn hospice care through formal education and training, supervised practice, guidance from more experienced inmates, and support from correctional staff. We discuss how emergent values of mentorship and stewardship are seen by volunteers and staff as integral to prison hospice sustainability and discuss implications of this volunteer-centric model for response-ability for the end-of-life care of prisoners.

Family Perspectives on Overall Care in the Intensive Care Unit

BackgroundFamily 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. ObjectiveThe purpose of the research was to understand family members’ perspectives regarding overall care of medical patients receiving intensive care. MethodsFamily 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. ResultsOf 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. DiscussionFindings 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 with hepatocellular carcinoma from the patient perspective: A longitudinal study.

373 Background: Hepatocellular carcinoma (HCC) is a growing problem. For those diagnosed with terminal HCC, there is no curative treatment. Despite a high death rate, no longitudinal studies were found examining the illness experience of patients with HCC as they are approaching death. The aim of this study was to describe the experience of living with terminal HCC and how it may affect end of life care from the perspective of patients. Methods: This was a longitudinal, prospective mixed methods pilot study using quantitative and qualitative approaches. Semi-structured interviews were conducted with a convenience sub-sample of 14 patients with HCC once a month for a 6-month period. The interview guide included questions about living with HCC, pain and symptom management strategies, treatment decisions, and any current concerns of significance. Interview data were analyzed using qualitative description. Results: This poster reports on qualitative analysis of 45 interviews from the sub-sample. Eleven patien...

Family members’ perspectives of caring for patients with terminal hepatocellular carcinoma.

323 Background: Hepatocellular carcinoma (HCC) is a growing problem worldwide and accounts for more than 700,000 deaths annually. There is no curative treatment for those diagnosed with terminal HCC. This group of patients differs from other populations with liver disease or cancer due to the combined disease processes of cancer and liver failure. Although family members often play an integral role in providing care, no study was found specifically examining family member experiences of caring for patients with terminal HCC. The aim of this study was to describe family members’ experiences and perceptions of providing care for patients with HCC as they near the end of life. Methods: This longitudinal, prospective pilot study described here presents the qualitative results of semi-structured in-person interviews with a convenience sub-sample of 13 family members conducted once a month for up to a 6-month period. The interview guide included questions about family member experiences of providing care for pa...