Browsing by Subject "End-of-life care"

Now showing 1 - 7 of 7
  • Thumbnail Image
    Item
    Attitudes Toward Advance Care Planning Among Persons with Dementia and their Caregivers
    (Cambridge University Press, 2020-05) Pettigrew, Corinne; Brichko, Rostislav; Black, Betty; O’Connor, Maureen K.; Guerriero Austrom, Mary; Robinson, Maisha T.; Lindauer, Allison; Shah, Raj C.; Peavy, Guerry M.; Meyer, Kayla; Schmitt, Frederick A.; Lingler, Jennifer H.; Domoto-Reilly, Kimiko; Farrar-Edwards, Dorothy; Albert, Marilyn; Psychiatry, School of Medicine
    Objectives: To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race. Design: Cross-sectional survey. Setting: 13 geographically dispersed Alzheimer's Disease Centers across the United States. Participants: 431 racially diverse caregivers of persons with dementia. Measurements: Survey on "Care Planning for Individuals with Dementia." Results: The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful. Conclusions: Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.
  • Thumbnail Image
    Item
    Exploratory Factor Analysis of the Comfort Assessment in Dying With Dementia Scale
    (Oxford University Press, 2023-12-21) Zhang, Peiyuan; Stump, Timothy; Tu, Wanzhu; Becker, Todd; Orth, Jessica; Floyd, Alexander; Unroe, Kathleen; Cagle, John; Biostatistics and Health Data Science, Richard M. Fairbanks School of Public Health
    The 14-item Comfort Assessment in Dying with Dementia (CAD-EOLD) scale is a widely used instrument measuring end-of-life care for people with dementia (PWD). The instrument has been used to evaluate symptom burden among PWD in nursing homes, but the measurement properties are less studied for symptoms reported by family and staff caregivers. We conducted an exploratory factor analysis to evaluate the psychometric properties of the scale using staff and family (N=476) responses to CAD-EOLD at the baseline of an NIH-funded clinical trial. Subjects were long-stay nursing home residents with moderate-to-severe cognitive impairment in Indiana and Maryland. Staff (n=368) and family members (n=108) completed the CAD-EOLD, describing participating residents. We performed separate exploratory factor analyses on family and staff responses. Family and staff data showed similar clustering patterns. Restlessness, anxiety, fear, crying, and moaning had high factor loadings in the first cluster, interpreted as “Physical and Psychological Distress” (loading range = 0.47–0.91). Choking, gurgling, and difficulty swallowing had high loadings in the second cluster that depicted “Dying Symptoms” (loading range = 0.62–1.15). Serenity, calm, and peace had high loadings in the third factor on “Well-Being” (loading range = 0.72–0.93). Three “Physical Distress” items (i.e., discomfort, pain, and shortness of breath) cross-loaded with “Dying Symptoms.” Accordingly, “Physical and Psychological Distress,” “Dying Symptoms,” and “Well-Being” represented important but separate dimensions for measuring end-of-life experiences of PWD. Findings demonstrated favorable construct validity of CAD-EOLD in PWD with moderate-to-severe cognitive impairment in nursing homes, as reported by staff and family caregivers.
  • Thumbnail Image
    Item
    Improving Neonatal Intensive Care Unit Providers' Perceptions of Palliative Care through a Weekly Case-Based Discussion
    (Mary Ann Liebert, Inc., 2021-04-16) Allen, Jayme D.; Shukla, Riddhi; Baker, Rebecca; Slaven, James E.; Moody, Karen; School of Nursing
    Objective: The primary objective was to evaluate the efficacy of a weekly palliative care-guided, case-based discussion of high-risk infants on Neonatal Intensive Care Unit (NICU) physician (MD) and Advanced Practice Provider (APP) perceptions of pediatric palliative care (PPC). Study Design: The study setting was a level IV academic NICU in a United States midwestern children's hospital. A pre/post design was used to evaluate the effects of a weekly palliative care-guided, case-based discussion of high-risk infants on neonatology providers' (MD and APP) perspectives of palliative and end-of-life care in the NICU using a previously published survey instrument. Surveys were completed at baseline and after 12 months of implementation. Data was analyzed with a Wilcoxon Signed Rank test with significance set at p < 0.05. Results: Thirty-one providers (13 APPs and 18 MDs) completed both pre- and post-intervention surveys. Post-intervention, providers were more likely to endorse that they "are comfortable with PPC", "feel comfortable teaching PPC to trainees", "feel confident handling end-of-life care", "have time to discuss PPC", and "were satisfied with the transition to end-of-life care for their most recent patient". They also were more likely to report, "families' perception of burden is relevant when making ethical decisions", that "parents are involved in decisions regarding palliative care", and that their "institution is supportive of palliative care." (p-values < 0.05 for all). Conclusion: NICU provider perceptions of palliative care can be improved through the implementation of a case-based interdisciplinary conference that emphasizes palliative care domains in the context of Neonatal ICU care.
  • Thumbnail Image
    Item
    Integrating Palliative Care into Nursing Care
    (Wolters Kluwer, 2022) Parekh de Campos, Amisha; Levoy, Kristen; Pandey, Shila; Wisniewski, Renee; DiMauro, Pierce; Ferrell, Betty R.; Rosa, William E.; School of Nursing
    The need for palliative care in our health care system has exponentially increased in the past few years as a result of the COVID-19 pandemic, the aging population, and the increasing number of people living with serious illnesses. While nurses play a critical role in delivering palliative care, many lack confidence and knowledge, causing practice gaps in the clinical and psychological management of seriously ill patients. The collective burden of the pandemic has demonstrated the importance of palliative care education and training, specifically in communication, symptom management, and continuing education. All nurses, including nursing students, transitioning nurses, and practicing nurses, should be trained to offer generalist (or primary) palliative care, in accordance with the American Association of Colleges of Nursing Essentials: Core Competencies for Professional Nursing Education. Provision of holistic, relationship-based, and integrated palliative care for patients and their families is an ethical obligation for all nurses.
  • Thumbnail Image
    Item
    Last wishes and clear choices – learning how to talk about end-of-life care
    (The Conversation US, Inc., 2015-01-12) Gunderman, Richard; Radiology and Imaging Sciences, School of Medicine
  • Thumbnail Image
    Item
    Reasons for Discordance Between Life-Sustaining Treatment Preferences and Medical Orders in Nursing Facilities Without POLST
    (Sage, 2023) Heim Smith, Nicholette L.; Sudore, Rebecca L.; Myers, Anne L.; Hammes, Bernard J.; Hickman, Susan E.; School of Nursing
    Background: Life-sustaining treatment (LST) orders are important communication tools used to ensure preference-concordant care at the end of life. Recent studies reveal concerning rates of discordance between current preferences and documented LST orders, especially in nursing facilities without POLST. Reasons for discordance in facilities using POLST have been explored, however the majority of nursing facilities in the United States do not yet use the POLST form. Design: Qualitative descriptive study using constant comparative analysis. Setting: Nursing facilities in Indiana (n = 6) not using POLST. Participants: Residents (n = 15) and surrogate decision-makers of residents without decisional capacity (n = 15) with discordance between current preferences and documented LST orders. Measurements: Do not resuscitate, do not hospitalize (DNH), and do not intubate (DNI) orders were extracted from medical charts. Current preferences were elicited using the Respecting Choices Advanced Steps model. A semi-structured interview guide was used to explore reasons for discordance between current preferences and LST orders. Results: Reasons for discordance included: (1) inadequate information about the range of available LST options, what each involves, and how to formally communicate preferences; (2) no previous discussion with facility staff; (3) no documentation of previously expressed preferences; and (4) family involvement. Conclusion: Reasons for discordance between expressed preferences and LST orders suggest that in facilities without a uniform and systematic LST order documentation strategy like POLST, these conversations may not occur and/or be documented. Staff should be aware that residents and surrogates may have preferences about LSTs that require strategic solicitation and documentation.
  • Thumbnail Image
    Item
    Self-determination and Care at the End of Life Opinion
    (2006-10-13T17:02:02Z) German National Ethics Council; Bioethics
    Dying is an individual process which, as such, cannot be removed from the sphere of the individual's self-determination. At the same time, however, it involves a range of different ethical obligations, legal demands and religious expectations, which call for thorough discussion and evaluation in all their aspects. The National Ethics Council has intensively discussed the issues involved in dealing responsibly with dying. It has perused a large volume of material, obtained expert opinions, consulted with doctors and other medical specialists, and held meetings in Augsburg and Munster at which it exposed itself to public debate. The outcome is enshrined in the Opinion now presented. Self-determination and care at the end of life continues the examination of the themes addressed in the Opinion The advance directive published in June 2005. The present analysis, in conjunction with the clarification of terminology here proposed, may facilitate interpretation of the recommendations set out in that Opinion.