acase@tulane.edu / High-quality end-of-life cancer care supports patients' quality of life by providing care to maximize comfort and minimize the physical or psychological harm often caused by unnecessary aggressive treatments. There are recognized racial inequities in the aggressiveness of end-of-life care between Black and White adults, but these discrepancies have not been examined thoroughly in the Deep South. This study has two aims: (a) to test the feasibility of utilizing a novel database in the Deep South and (b) to examine the association between race and aggressive end-of-life cancer care. Retrospective administrative data were extracted from the Research Action for Health Network (REACHnet) database using their Common Data Model. Logistic regressions were used to analyze the relationship between race and each indicator of aggressive care (chemotherapy use, inpatient hospitalization, emergency department admission, intensive care unit admission, or mechanical ventilation in the 30 days before death). Additionally, ordinal regression was used to examine the relationship between race and a composite measure of all indicators of aggressive care. Utilizing the REACHnet database was successful to provide clinical health data. Results supported the omnibus hypothesis and partially hypotheses focused on specific indicators of aggressive care. Racial disparities in the Deep South exist which may impact a patient’s treatment and subsequent quality of life near death. The mechanisms driving such disparities deserve further attention to eliminate racial disparities in end-of-life care for patients with advanced cancer. / 0 / Leah Walsh

Aims: To evaluate end of life practices among hospitalised children who died of HIV/AIDS. Design: Retrospective chart review. Setting: A public, secondary and tertiary children's teaching hospital in a developing country. Patients: A consecutive series of in-patient deaths among HIV-infected children. Main Outcome Measures: Identification of patients as dying, presence of do not resuscitate (DNR) orders, documentation of comfort care plans, whether end of life decisions were discussed with parents or caretakers, nature of diagnostic and therapeutic interventions in the last 24 hours of life, and presence of pain and distress in the last 48 hours of life. Results: 165 out of 167 in-patient deaths were reviewed. 79% of patients died in the general wards. The median age of patients was 4 months. The median length of hospitalisation was 6 days. 30% of patients fell in Category B. Patients with shorter lengths of stay were more likely to fall in Category B (median 4 days versus 7 days, P=0.0000). About 1 quarter of patients had a median length of stay of 25 days. 84% of patients had a DNR order, with a median of 4 days between admission and documentation of the order. DNR orders appeared simultaneously in only 41 % of medical and nursing entries. 39% and 63% respectively of doctors did not document their justification for the DNR order or whether it had been discussed with parents. 50% of patients were identified as dying. Terminology such as 'TLC' and 'keep comfortable' designated 44% of patients to receive comfort care only. The median time between admission and identifying a patient as dying and documenting a comfort plan was 5 days and 7 days respectively. In 44% of folders there was no indication of whether the comfort plan had been discussed with parents. 73% and 62% respectively of patients with comfort plans received IV fluids and IV antibiotics in their last 24 hours of life. 55% of patients who died in general wards experienced pain and distress in the last 48 hours of life. Respiratory symptomatology and oral and oesophageal candidiasis accounted for most discomfort. 2 in 5 patients with a comfort plan failed to receive analgesia, despite pain and distress. Conclusions: Despite extreme diagnostic and prognostic uncertainty, doctors made key end of life decisions. Doctors' practices often failed to meet procedural and ethical requirements in professional guidelines. Failure to discuss DNR orders or comfort plans with parents ignores their role as principal decision makers for their children. The low rate of comfort plans, compared to DNR orders, suggests doctors had difficulty making the transition from curative to palliative care. Many comfort plans were incoherent and included interventions neither meant for, nor likely to promote patients' comfort. Whilst fear of hastening death may explain doctors' reluctance to prescribe adequate analgesia, undertreating pain and distress in a dying child is of more concern morally and medically than the risk of suppressing respiratory effort. To achieve better end of life care for HIV-infected children, it will be necessary to improve practice patterns. A structured medical treatment plan that focuses on goals of care is proposed to manage transitions from life-sustaining treatment to palliation.

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The purpose of this quasi-experimental study was to assess the ongoing impact of the End-of-Life Nursing Education Consortium (ELNEC) training program on registered nurses’ death anxiety, concerns about dying, and knowledge of the dying process utilizing the principles of The Comfort Theory and Practice by Kolcaba (2003) at the institutional level. The research hypothesis was upon completion of the ELNEC training, registered nurses would have decreased death anxiety, less concerns about dying, and increased knowledge of the dying process. The Revised Death Anxiety Scale (RDAS) was used to measure death anxiety which is a 25 item self-report questionnaire. The Concerns about Dying Instrument (CAD) was used to measure death attitude or concerns about dying which includes three distinct but related areas for providers: general concern about death, spirituality, and concerns about working with dying patients. Participant's perceived knowledge of dying was measured using a self report 5-point Likert format with “0“ indicating no level of knowledge to “4“ reflecting complete knowledge of death and dying. Pre-tests of all dependent variables were administered to both a treatment and control group. Post-tests were administered two weeks after the two day ELNEC training, at 6 months, and finally at 12 months to both groups in order to study its lasting efficiency upon participants at one primary care medical center. Thirty eight participants completed all four questionnaires with 27 participants in the control group and 11 participants in the experimental group. Matched pair analysis with 11 participants in each group was conducted with statistical significance found for perceived knowledge about dying at post two weeks and 12 months (p= 0.01) for the intervention group. Death anxiety and concerns about dying were not found to be statistically significant at any testing interval, but mean scores of the treatment group revealed less death anxiety and concerns about dying. Recommendations included offering the ELNEC training on a routine basis to all registered nurses who care for dying patients. Additionally, clinicians and administrators were encouraged to seek out additional funding opportunities to plan more robust studies with larger samples, incentives, and research method triangulation addressing the qualitative aspects of palliative care. / Ph. D.

The purposes of this study were to evaluate the frequency of documented prognosis discussions among terminally ill cancer patients, to identify correlates of having documented prognosis discussions, and to describe the content of prognosis discussions as documented in patient medical records. Sample data were collected from the randomly selected medical records of inpatients (n=210) aged 65 years or older and admitted with diagnoses of brain, pancreas, liver, gall bladder, or inoperable lung cancer from six large Connecticut hospitals. A standardized instrument was used to extract data concerning patient demographics, hospital course, prognosis discussions, and evidence of advance care planning. Prognosis discussions were recorded in 79 (38%) of medical records and were correlated with emergency admission status (p=0.004) and longer length of hospital stay (p=0.003) on multivariate analysis. Of the documented prognosis discussions, 63% were within one week of admission but after the first day, and 57% included the patient, 76% included the family, 77 % included the doctor, and 69% did not include another health staff member (n=79). Life sustaining treatment discussions and DNR orders were both associated with prognosis discussions (p=0.001 and p=0.001, respectively) and were more often documented after the prognosis discussions. Prognosis discussions included planning for care and treatment in 33 (42%) of discussions documented. In conclusion, we found that prognosis discussions were infrequently documented during the hospitalization of terminally ill patients diagnosed with cancer. We also found that advance care planning, such as discussions of life sustaining treatment and DNR orders, was significantly associated with prognosis discussions and more often occurred after prognosis was discussed.

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Many organizations such as the Institute of Medicine, the World Health Organization and the National Consensus Project for Quality Palliative Care have identified the need for equitable access to palliative and end-of-life care (Ferrell, Coyle, & Paice, 2015). However, in many rural areas of the world, including rural Wyoming, patients at end-of-life are cared for in acute care settings where nurses have not received specialized training and education on evidence based end-of-life care. The aim for this DNP project was to assess rural registered nurses' perceptions of competencies important in end-of-life nursing practice (Coyne & White, 2011). A 32-item survey developed by White and Coyne (2011) was adapted for use in a rural critical access hospital to determine content priorities and educational needs of generalist nurses in a rural setting, regarding providing palliative and end-of-life care. A purposive sample of 16 nurses in a rural critical access hospital in Wheatland, WY, who care for patients at end-of-life, completed the survey. Only one-third of the nurses surveyed reported receiving any type of end-of-life care education in the prior two years. Similar to findings from the study completed in 2011 in an urban area, symptom management, talking to patients and families about death and dying, and pain control were the highest ranking core competencies. Nurses who did report receiving education in end-of-life care still felt inadequately prepared to talk to patients and families about dying, and this needs assessment identified that educational gaps are evident regarding provision of end-of-life nursing care in rural settings. The information gleaned from this survey will be used to design an educational program to disseminate evidence based practice guidelines regarding providing quality end-of-life care using ELNEC (End-of-Life Nursing Education Consortium) modules based on the findings of the needs assessment survey

Guided by an explanatory matrix of family conflict at the end-of-life, the goals of this mixed methods study were to further generate theory regarding family conflict and to provide insights into its correlates and predictors. Sources of data analyzed include quantitative survey responses from 161 hospice family caregivers, 15 in-depth interviews with hospice family caregivers, and 10 interdisciplinary focus groups with hospice professionals. An explanatory matrix is presented that portrays family conflict at the end-of-life as a complex phenomenon influenced by salient contextual variables, conditions, and factors that may contribute to a number of negative outcomes for patients, family members, and professionals. The matrix also provides a beginning understanding of approaches utilized by hospice professionals in their work with families experiencing conflict. Significant bivariate correlations were found between family conflict and family context variables (i.e. prior conflict, length of caregiving, caregiver gender, caregiver age, presence of children in the caregiver’s home, advance planning discussions within family), conditions (i.e. family coming out of the woodwork and patient care needs) and contributing factors (i.e. communication constraints and family asserting control). In the multivariate model, significant predictors of family conflict included prior conflict, caregiver gender, caregiver age, advance planning discussions within family, family coming out of the woodwork, communication constraints, and family asserting control; the model explained 60% of the variance in family conflict. Implications for routine assessment, further examination of interventions to prevent and address conflict, and future research are highlighted. / text

1998 Dozier Award Winner / It is widely recognized that the role of the physician has undergone dramatic changes in the last century changes which have serous implications for the patient-physician relationship. This is an ethnographic study examining how certain changes in the role and abilities of biomedical physicians have affected patient attitudes and expectations about end-of-life care. In-home interviews were conducted with eighteen persons age fifty-five and older, including a sample of Hemlock Society members. Results indicate a broad spectrum of end-of-life concerns including capacity, autonomy, pain, and burden to loved ones. Most participants reported a reluctance to begin a discussion of death or future deteriorating capacity with their physicians. Instead, when conversations about death were reported, they had been largely limited to the scenarios of catastrophic illness (e.g., hospitalization, ventilator, etc.) and the Living Will. While this discussion does not overlook the utility of the Living Will, it proposes that reliance on this document for preparing patients for end-of-life care is inadequate.