Browsing by Subject "End of life"

Now showing 1 - 3 of 3
  • Thumbnail Image
    Item
    Circumstances Surrounding End-of-Life in Pediatric Patients Pre- and Post-Heart Transplant: A Report from the Pediatric Heart Transplant Society
    (Wiley, 2022) Cousino, Melissa K.; Yu, Sunkyung; Blume, Elizabeth D.; Henderson, Heather T.; Hollander, Seth A.; Khan, Sairah; Parent, John Jerry; Schumacher, Kurt R.; Pediatrics, School of Medicine
    Background: Although mortality has decreased considerably in pediatric heart transplantation, waitlist and post-transplant death rates remain notable. End-of-life focused research in this population, however, is very limited. This Pediatric Heart Transplant Society study aimed to describe the circumstances surrounding death of pediatric heart transplant patients. Methods: A retrospective analysis of the multi-institutional, international, Pediatric Heart Transplant Society registry was conducted. Descriptive statistics and univariate analyses were performed to 1) describe end-of-life in pediatric pre- and post-heart transplant patients and 2) examine associations between location of death and technological interventions at end-of-life with demographic and disease factors. Results: Of 9217 patients (0-18 years) enrolled in the registry between 1993 and 2018, 2804 (30%) deaths occurred; 1310 while awaiting heart transplant and 1494 post-heart transplant. The majority of waitlist deaths (89%) occurred in the hospital, primarily in ICU (74%) with most receiving mechanical ventilation (77%). Fewer post-transplant deaths occurred in the hospital (22%). Out-of-hospital death was associated with older patient age (p < .01). Conclusions: ICU deaths with high use of technological interventions at end-of-life were common, particularly in patients awaiting heart transplant. In this high mortality population, findings raise challenging considerations for clinicians, families, and policy makers on how to balance quality of life amidst high risk for hospital-based death.
  • Thumbnail Image
    Item
    Inmates Care: Computer-Based Training for Geriatric and End-of-Life Care in Prisons
    (Mary Ann Liebert, 2021) Loeb, Susan J.; Murphy, Julie L.; Kitt-Lewis, Erin; Wion, Rachel K.; Jerrod, Tiffany; Myers, Valerie H.; School of Nursing
    The growing aged and dying incarcerated population increases demands on corrections health care. People who are incarcerated can assist in care delivery; however, currently, their training is typically face-to-face, home grown, and variable in content and duration. Six focus groups conducted with peer caregivers (PCs) (n = 12) and staff (n = 15) identified priority training topics. Three prototype modules (Standard Precautions; Loss and Grief; and Role of the Inmate Caregiver in the Final Hours) were developed in consultation with an advisory board. Face-to-face usability testing with (n = 20) PCs and staff confirmed contextual relevance and feasibility of the Inmates Care training. The mean system usability score for all participant segments was 86.5. Inmates Care holds promise to complement nurse-led training with a standardized e-training package.
  • Thumbnail Image
    Item
    Intensive Treatment Near the End of Life in Advanced Cancer Patients
    (2016-04-07) Touza, Kaitlin Kyna; Rand, Kevin L.; Stewart, Jesse; Mosher, Catherine Esther; Grahame, Nicholas J.
    Many advanced cancer patients receive intensive treatment near the end of life (EOL). Intensive treatment near the EOL is often associated with worse outcomes, such as worse quality of life (QOL), greater distress in patients and caregivers, and higher health care costs. For cancers typically unresponsive to chemotherapy such as lung and gastro-intestinal (GI), the side effects of intensive treatment are endured without increasing survival time. To date, research on EOL care in advanced cancer patients has focused on patient prognostic understanding, physician communication, and patient distress. These factors do not fully explain why many patients receive intensive treatment near the EOL when there is no hope for cure. Hence, there is a need to better understand the factors that influence EOL treatment in order to improve patient and caregiver outcomes. Self-Regulation Theory (SRT) provides a framework that may help explain motivations and care decisions in this population. This study had two aims: 1) to examine the associations between EOL clinical encounters (i.e., EOL conversations with a physician) and treatment intensity in advanced cancer patients near the EOL; and 2) to examine the associations between important SRT constructs (i.e., goal flexibility, hope, and optimism) and treatment intensity in advanced cancer patients near the EOL. A sample of 76 advanced lung and GI cancer patients was recruited from Indiana University Simon Cancer Center. Hope predicted receiving chemotherapy closer to death (β = -.41, t (66) = -2.31, p = .025), indicating more intensive treatment near EOL. Other predictor variables were not significantly associated with intensive treatment. Implications and methodological limitations are discussed.