IU Indianapolis ScholarWorks :: Browsing by Subject "End of Life"

Browsing by Subject "End of Life"

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Administrators' perspectives on ethical issues in long-term care research
(2008) Hickman, Susan E.; Cartwright, Juliana C.; Young, Heather M.
ETHICAL ISSUES ARE A SIGNIFICANT potential barrier to much-needed research in long-term care settings. LTC stakeholder perspectives are largely absent from the development of regulation and guidelines. Fifteen long-term care administrators were interviewed as part of a study of ethical issues in community-based, long-term care research. Established qualitative procedures for conducting content analysis were used to organize the data. Findings suggest that existing mechanisms to protect human subjects do not take into account important differences between academic and long-term care settings. The full potential of LTC research will not be realized until supportive processes to enhance human subjects protections are developed in a way that is reflective of the LTC environment.
Advance directives in home health and hospice agencies: United States, 2007
(2011-11) Resnick, Helaine E.; Hickman, Susan E.; Foster, Gregory L.
This report provides nationally representative data on policies, storage, and implementation of advance directives (ADs) in home health and hospice (HHH) agencies in the United States using the National Home and Hospice Care Survey. Federally mandated ADs policies were followed in >93% of all agencies. Nearly all agencies stored ADs in a file at the agency, but only half stored them at the patient's residence. Nearly all agencies informed staff about the AD, but only 77% and 72% of home health agencies informed the attending physician and next-of-kin, respectively. Home health and hospice agencies are nearly universally compliant with ADs policies that are required in order to receive Medicare and Medicaid payments, but have much lower rates of adoption of ADs policies beyond federally mandated minimums.
Advanced care planning: Tips from the National Institute on Aging
(http://www.nia.nih.gov/health/publication/end-of-life, 2014-03) National Institute on Aging Information Center, U.S.
The Association of Surrogate Decision Makers’ Religious and Spiritual Beliefs with End of Life Decisions
(Elsevier, 2020-02) Torke, Alexia M.; Fitchett, George; Maiko, Saneta; Burke, Emily S.; Slaven, James E.; Newton Watson, Beth; Ivy, Steven; Monahan, Patrick O.; Biostatistics, School of Public Health
Context: Although religion and spirituality are important to surrogate decision makers, little is known about the role of religion in decision making regarding life-sustaining treatments. Objectives: To determine the relationships between dimensions of religion and spirituality and medical treatment decisions made by surrogates. Methods: This prospective observational study enrolled patient/surrogate dyads from three hospitals in one metropolitan area. Eligible patients were 65 years or older and admitted to the medicine or medical intensive care services. Baseline surveys between hospital days 2 and 10 assessed seven dimensions of religion and spirituality. Chart reviews of the electronic medical record and regional health information exchange six months after enrollment identified the use of life-sustaining treatments and hospice for patients who died. Results: There were 291 patient/surrogate dyads. When adjusting for other religious dimensions, demographic, and illness factors, only surrogates' belief in miracles was significantly associated with a lower surrogate preference for do-not-resuscitate status (adjusted odds ratio [aOR] 0.39; 95% CI 0.19, 0.78). Among patients who died, higher surrogate intrinsic religiosity was associated with lower patient receipt of life-sustaining treatments within the last 30 days (aOR 0.66; 95% CI 0.45, 0.97). Belief in miracles (aOR 0.30; 95% CI 0.10, 0.96) and higher intrinsic religiosity (aOR 0.70; 95% CI 0.53, 0.93) were associated with lower hospice utilization. Conclusion: Few religious variables are associated with end-of-life preferences or treatment. Belief in miracles and intrinsic religiosity may affect treatment and should be identified and explored with surrogates by trained chaplains or other clinicians with appropriate training.
Compassion and Vigilance: Investigators' Strategies To Manage Ethical Concerns in Palliative and End-of-Life Research
(2012) Hickman, Susan E.; Cartwright, Juliana C.; Nelson, Christine A.; Knafl, Kathleen
Background Ethical concerns were identified as a potential barrier to advancing palliative and end-of-life science at the 2004 National Institutes of Health State of the Science Meeting. However, data are lacking about the nature of ethical concerns and strategies for balancing the need to advance science with human subjects protections. Methods A qualitative case-study design was used to follow 43 end-of-life studies from proposal development through the review process and implementation. Investigators participated in semi-structured telephone interviews and provided document data regarding their experiences with grant and IRB reviews. Using constant comparative analysis within and across cases, the investigators identified commonly encountered and unique concerns and strategies for managing these concerns. Findings Investigator strategies fell into two broad categories: 1) Recruitment and consent strategies related to subject identification and enrollment; and 2) Protocol-related strategies related to the process of data collection. These strategies shared the overarching meta-themes of compassion, as evidenced by a heightened sensitivity to the needs of the population, coupled with vigilance, as evidenced by close attention to the possible effects of study participation on the participants' well-being, clinical care, and the needs of research staff. Conclusions Ethical concerns have led to the development of compassionate and vigilant strategies designed to balance the potential for risk of harm with the need to advance the science of palliative and end-of-life care. These strategies can be used by investigators to address ethical concerns and minimize barriers to the development of palliative and end-of-life care science.
End-of-life care: Conscientious objection in the healing professions
(IU Center for Bioethics, 2014-05-31) Odell, Jere D.; Abhyankar, Rahul; Comer, Amber (Malcolm); Rua, Avril N.
Investigators’ Successful Strategies for Working with Institutional Review Boards
(2013) Cartwright, Juliana C.; Hickman, Susan E.; Nelson, Christine A.; Knafl, Kathleen A.
This study was designed to identify successful strategies used by investigators for working with their Institutional Review Boards (IRBs) in conducting human subjects research. Telephone interviews were conducted with 46 investigators representing nursing, medicine, and social work. Interview transcripts were analyzed using qualitative descriptive methods. Investigators emphasized the importance of intentionally cultivating positive relationships with IRB staff and members, and managing bureaucracy. A few used evasive measures to avoid conflict with IRBs. Few successful strategies were identified for working with multiple IRBs. Although most investigators developed successful methods for working with IRBs, further research is needed on how differences in IRB culture affect human subjects protection, and on best approaches to IRB approval of multi-site studies.
Physicians' and nurses' perspectives on increased family reports of pain in dying hospitalized patients
(2000) Hickman, Susan E.; Tolle, Susan W.; Tilden, Virginia P.
Many indicators suggest that care of the dying in Oregon has been improving over the past decade. However, results from a recent study suggest that one aspect of care of the dying, pain management, may be worsening. In late 1997, family reports of moderate and severe pain in dying hospitalized patients increased from 33% to 57%. This occurred during a volatile time in the Oregon political climate associated with events surrounding a second vote on physician-assisted suicide. In order to better understand the observed increase better, a statewide sample of physicians and nurses was surveyed to obtain their opinions about factors that may have contributed to the increased family reports of moderate and severe pain in dying hospitalized patients. Seventy-nine percent of respondents endorsed two or more factors as partial explanations. These factors include an increase in family expectations about pain management (endorsed by 96%), decreased physician prescribing (endorsed by 66%), and reduced nurse administration of pain medication (endorsed by 59%). Physicians who thought reduced physician prescribing was a partial factor rated fears of the Board of Medical Examiners and the Drug Enforcement Administration as the most likely explanations for decreased prescribing. More research is needed to better understand family expectations for end-of-life care, fears of investigation, and pain medication practices.
Trends in opioid use over time: 1997 to 1999
(2004-02) Tolle, Susan W.; Hickman, Susan E.; Tilden, Virginia P.; Bubalo, Joseph S.; Fromme, Erik K.
Substantial resources have been spent to improve pain control for dying patients, and increased opioid administration has been presumed. Oregon has been a consistent leading state in per capita use for morphine for the past 10 years, as recorded by the Automation of Reports and Consolidated Orders System (ARCOS). Health policy experts, extrapolating from World Health Organization methods, have suggested these data are indicative of the quality of end-of-life care in Oregon. To determine whether trends in opioid prescription at the state and national levels reflect increased opioid use for inpatients during the final week of life, chart reviews were conducted to record all opioid medications administered in the last week of life to 877 adult inpatients who died from natural causes between January 1, 1997 and December 31, 1999. Inpatient morphine use did not increase significantly for dying patients from 1997 to 1999. However, overall morphine use for both Oregon and the United States as measured by ARCOS data increased significantly. Comparisons revealed no significant difference between linear trends for Oregon and U.S. morphine use, but both were significantly greater than the dying inpatients. This pattern was also found for all other opioids. These findings suggest that ARCOS data do not necessarily provide information about opioid use for specific subpopulations of patients and raise questions about the meaning of observed increases in ARCOS data.
Use of the Physician Orders for Life-Sustaining Treatment (POLST) Paradigm Program in the Hospice Setting
(2009-02) Hickman, Susan E.; Nelson, Christine A.; Moss, Alvin H.; Hammes, Bernard J.; Terwilliger, Allison; Jackson, Ann; Tolle, Susan W.
Background The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm Program was designed to ensure the full range of patient treatment preferences are honored throughout the health care system. Data are lacking about the use of POLST in the hospice setting. Objective To assess use of the POLST by hospice programs, attitudes of hospice personnel toward POLST, the effect of POLST on the use of life-sustaining treatments, and the types of treatments options selected by hospice patients. Design A telephone survey was conducted of all hospice programs in three states (Oregon, Wisconsin, and West Virginia) to assess POLST use. Staff at hospices reporting POLST use (n = 71) were asked additional questions about their attitudes toward the POLST. Chart reviews were conducted at a subsample of POLST-using programs in Oregon (n = 8), West Virginia (n = 5), and Wisconsin (n = 2). Results The POLST is used widely in hospices in Oregon (100%) and West Virginia (85%) but only regionally in Wisconsin (6%). A majority of hospice staff interviewed believe the POLST is useful at preventing unwanted resuscitation (97%) and at initiating conversations about treatment preferences (96%). Preferences for treatment limitations were respected in 98% of cases and no one received unwanted cardiopulmonary resuscitation (CPR), intubation, intensive care, or feeding tubes. A majority of hospice patients (78%) with do-not-resuscitate (DNR) orders wanted more than the lowest level of treatment in at least one other category such as antibiotics or hospitalization. Conclusions The POLST is viewed by hospice personnel as useful, helpful, and reliable. It is effective at ensuring preferences for limitations are honored. When given a choice, most hospice patients want the option for more aggressive treatments in selected situations.

Browsing by Subject "End of Life"

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